I have been following the Stem Cells Australia website and there has been a study looking at the safety issues of stem cell therapy. I think safety is incredibly important as it is great when a treatment looks to be working, but if things can go wrong further down the track it can be disastrous. The Universities of Melbourne and NSW were apart of the study as well as the CSIRO (Commonwealth Scientific and Industrial Research Organisation). They found that some stem cells after prolonged growth can have genetic changes (like that of cancer), but the majority will not change. The study states that if the changing stem cells can be eliminated it would reduce further complications down the track.
Safety is paramount when dealing with the human body. I think I'd be quite nervous being apart of studies and I admire the bravery of those who do. Safety studies like this help eliminate adverse possibilities and I think it is promising that there is so much research focusing on stem cells.
Here's the link to the Stem Cells Australia website, with further links at the bottom of their page.
Stem Cells Australia
Xmas pressie for me
I've been a bit slack with posting in the past week, but I've been SO excited for Christmas!! I've already bought myself a pressie and am waiting for it to be delivered. Yep I gave in and got myself the iPad 2. I've never been so excited to get something and I can't wait to download all the books I've been itching to read and zoom them real big and lie in bed and catch up on what I've been missing. I recently bought a whole lot of books in my denial that I could still read, but I finally faced the fact that I can't and have to give them away. So I'm looking forward to using the iPad to read.
Another thing I can't wait to do on it (which is quite embarrassing) is play all my games that I struggle to play on my iPhone. I am currently addicted to My Town (I know such a childish game) and another game Temple Run. I really am a big kid! Having a bigger screen to play my addictions is probably only going to make my addictions worse, but nevertheless it will be fantastic!
Another thing I can't wait to do on it (which is quite embarrassing) is play all my games that I struggle to play on my iPhone. I am currently addicted to My Town (I know such a childish game) and another game Temple Run. I really am a big kid! Having a bigger screen to play my addictions is probably only going to make my addictions worse, but nevertheless it will be fantastic!
Senses
I've noticed in recent months that my senses have changed. I was once told by someone wise that when you lose one sense the other senses become more enhanced. I must say that I have an incredible sense of smell. I smell everything. It makes me quite nauseous at times. But I haven't always been like this. I can't use plates are glasses if they aren't washed properly because they smell. My bathroom needs to be so clean and disinfected because I can smell what has been going on in there! I can smell food from a mile away (good or bad), flowers and even rain!
I know what some of you might be thinking, and no I am not pregnant, but I hate to see what my sense of smell turns into then! I have found that a lot of smells are more pungent and even make me want to vomit. I wonder if this is because of my dwindling sight?
I have always had problems with my ears, but I have noticed that I do hear a lot of subtle noises. And I have noticed I have this habit of having a TV show on and I don't look like I am watching it (because I can't see it properly) but I am listening to it and picturing it in my mind. My boyfriend gets quite cranky when he wants to change the channel and I protest that I am watching it even though I'm not facing the TV!!
I think it's interesting how your senses can change and adapt to what is happening with your body. I have realised that I should use the sense I have and have taken to observing what things smell, sound or feel like when I get frustrated that I can't see the detail. You'd be amazed at the different light you see the world in. It smells fantastic!!!!
I know what some of you might be thinking, and no I am not pregnant, but I hate to see what my sense of smell turns into then! I have found that a lot of smells are more pungent and even make me want to vomit. I wonder if this is because of my dwindling sight?
I have always had problems with my ears, but I have noticed that I do hear a lot of subtle noises. And I have noticed I have this habit of having a TV show on and I don't look like I am watching it (because I can't see it properly) but I am listening to it and picturing it in my mind. My boyfriend gets quite cranky when he wants to change the channel and I protest that I am watching it even though I'm not facing the TV!!
I think it's interesting how your senses can change and adapt to what is happening with your body. I have realised that I should use the sense I have and have taken to observing what things smell, sound or feel like when I get frustrated that I can't see the detail. You'd be amazed at the different light you see the world in. It smells fantastic!!!!
Brain chips to help the blind!
I was doing my usual lunchtime news browse and found an article of interest on brain chips. Apparently, a Utah University has developed a silicone chip that implants in the brain to help cure nervous system disorders like paralysis and blindness. It has been successful in animals and they want to trial it on humans.
I'm not sure how helpful this would be for Stargardt's but they are saying it could cure blindness. Another option to be followed!
Here's the link to the news article.
Brain chips could aid the blind, paralysed
I'm not sure how helpful this would be for Stargardt's but they are saying it could cure blindness. Another option to be followed!
Here's the link to the news article.
Brain chips could aid the blind, paralysed
Aussie Stem Cells
There is a new Aussie initiative officially launched on the 10th November 2011 called "Stem Cells Australia". It is led by Professor Martin Pera in collaboration with various Australian Universities and Research Institutes and supported by the Australian Government. One aspect of their research is in human embryonic stem cells and their ability to become any bodily cells, which as we know is being trialled as a potential treatment for Stargardt's. They also aim to tackle ethical issues surrounding stem cells, which is sure to be an interesting debate!
As yet, there is no specific mention to Stargardt's or any ocular conditions, but it is a step in the right direction for Australia and for the possibility of treatments being made available here.
The website has a whole heap of information so check it out.
I am particularly looking forward to the ethical debates, since it is a potential treatment for Stargardt's and I know there are many groups opposing the use of embryonic stem cells.
Will keep all updated!
Stem Cells Australia
As yet, there is no specific mention to Stargardt's or any ocular conditions, but it is a step in the right direction for Australia and for the possibility of treatments being made available here.
The website has a whole heap of information so check it out.
I am particularly looking forward to the ethical debates, since it is a potential treatment for Stargardt's and I know there are many groups opposing the use of embryonic stem cells.
Will keep all updated!
Stem Cells Australia
Denial
I have now known about my condition for two years and I feel as though I have accepted it. The funny thing is the people around me don't seem to have. It's like they don't want to accept that my vision is deteriorating and they pretend as though it's not happening or it's not as bad as it is. But if I can accept it why can't everybody else around me? I think it has a lot to do with my age - being young the first thing people say when you tell them is "can't you get laser?" This is one comment that is starting to bug me. If I could be treated do you not think I would have gotten treatment?!?!?! I think it's hard for a lot of people to understand because they can't fathom the idea of a young person becoming blind and it doesn't help nobody has heard of Stagardt's disease. I try and explain it as similar to macular degeneration, but as that is a condition associated with older generations people still struggle to comprehend.
I think it is hard for those around me to put them selves in my shoes and see what I can see. If you saw me walking down the street you wouldn't know that I probably can't see your face. It's as though to be classified as vision impaired or legally blind you need to have the stereo typical dark glasses, walking stick or guide dog.
It is hard to deal with the fact that you are losing your sight at a young age, but the best thing I have done is to accept it and take it n my stride. I can see the world in a different light, I focus a lot on the way things sound or smell, to make up for the lack of detail I can see. I do have the bad days and feel as though I'm struggling at my job and my eyes are strained and tired, but I do believe in the future there will be a treatment and for the time being I should embrace this experience. After all whatever doesn't kill you will make you stronger!
I think it is hard for those around me to put them selves in my shoes and see what I can see. If you saw me walking down the street you wouldn't know that I probably can't see your face. It's as though to be classified as vision impaired or legally blind you need to have the stereo typical dark glasses, walking stick or guide dog.
It is hard to deal with the fact that you are losing your sight at a young age, but the best thing I have done is to accept it and take it n my stride. I can see the world in a different light, I focus a lot on the way things sound or smell, to make up for the lack of detail I can see. I do have the bad days and feel as though I'm struggling at my job and my eyes are strained and tired, but I do believe in the future there will be a treatment and for the time being I should embrace this experience. After all whatever doesn't kill you will make you stronger!
Another potential cure by Alkeus!
I have come across another company looking into a treatment for Stargardt's Disease. The company is Alkeus Pharmaceuticals in the US. They have created new compounds to treat Stargardt's as well as Age Related Macular Degeneration. So far they have tested these compounds on mice with success.
They have a page where you can register to be apart of future trials and also a Stargardt's registry. The trials will take place in New York so it is a good excuse for a holiday! I've posted the link below so check it out and register!
Alkeus Stargardt's Registry
They have a page where you can register to be apart of future trials and also a Stargardt's registry. The trials will take place in New York so it is a good excuse for a holiday! I've posted the link below so check it out and register!
Alkeus Stargardt's Registry
Vitamin A
I came accross an article published in 2010 by Ma, Kaufman, Zhang and Washington from the Department of Opthalmology at the Colombia University Medical Centre about a dose combination acting upon vitamin A in the retina. The article was quite interesting, having been conducted on a mouse model of Stargardt's disease. The study used a dose combination of vitamin A and something called C20D3 directly on the retina.
Lipofuscin, which are the yellowish granules, accumulate in the retina causing permanent damage. I'm no chemistry whiz, but from what I deciphered the study found that if you could stop the chemical reaction occurring that allows two separate vitamin A molecules to combine and cause damage, the retina would not deteriorate. Thus, they made a combination of vitamin A and the C20D3 character to stop this chemical reaction occurring.
The study found this to work in mice, and thus may benefit humans. Although this would not restore sight already lost, but it could prevent further deterioration.
It is early stage research but it is quite promising to know that there is another group of people researching Stargardt's to help find us a cure.
The details of the article are below:
C20-D3-vitamin A Slows Lipofuscin Accumulation and Electrophysiological Retinal Generation in a Mouse Model of Stargardt's Disease.
By Li Ma, Yardana Kaufman, Junhua Zhang and Ilyas Washington
Lipofuscin, which are the yellowish granules, accumulate in the retina causing permanent damage. I'm no chemistry whiz, but from what I deciphered the study found that if you could stop the chemical reaction occurring that allows two separate vitamin A molecules to combine and cause damage, the retina would not deteriorate. Thus, they made a combination of vitamin A and the C20D3 character to stop this chemical reaction occurring.
The study found this to work in mice, and thus may benefit humans. Although this would not restore sight already lost, but it could prevent further deterioration.
It is early stage research but it is quite promising to know that there is another group of people researching Stargardt's to help find us a cure.
The details of the article are below:
C20-D3-vitamin A Slows Lipofuscin Accumulation and Electrophysiological Retinal Generation in a Mouse Model of Stargardt's Disease.
By Li Ma, Yardana Kaufman, Junhua Zhang and Ilyas Washington
Eye Colour
I'm sure I read somewhere that Stargardt's or retinal eye conditions affect more blue eyed people than brown. I've tried to look up articles to see if my recollection can be validated, but I haven't been successful.
So just for a little experiment, I ask everybody who views this with Stargardt's or any other retinal condition to comment with their eye colour. Maybe we can discover something interesting!
I have dark brown eyes (and apparently the dark colour protect me from the sun). So what colour are your eyes?
So just for a little experiment, I ask everybody who views this with Stargardt's or any other retinal condition to comment with their eye colour. Maybe we can discover something interesting!
I have dark brown eyes (and apparently the dark colour protect me from the sun). So what colour are your eyes?
I love ZoomText
ZoomText is my new best friend. After a long wait I finally had it installed on my work computer and I find it amazing. The majority of my job is computer based, and the programs that we use have the smallest font that even perfect sighted people struggle to read at times. I have spent so much time craning my neck and straining to read, and having ZoomText on my computer is probably the best thing I have done so far for my condition. I was finding that I was getting headaches and a sore neck, which I get no more!
I also put the software on my home computer, which I also bought a 27 inch monitor for (and it's HUGE!), and I am in heaven. I'm used to the sliding across the screen now and I can't use a computer without it.
The software has some nifty inclusions - changing colour schemes, changing the mouse so it's bigger or has a circle around it, making the cursor larger and the speech component, which I haven't had the need to use as yet, and when I have people wonder what's going on in my office when they hear a weird, computerised voice coming from it!
I highly recommend the software, it has changed my life!
As mentioned I purchased my ZoomText from Quantum in Australia and their website is below.
Quantum Reading Learning Vision
I also put the software on my home computer, which I also bought a 27 inch monitor for (and it's HUGE!), and I am in heaven. I'm used to the sliding across the screen now and I can't use a computer without it.
The software has some nifty inclusions - changing colour schemes, changing the mouse so it's bigger or has a circle around it, making the cursor larger and the speech component, which I haven't had the need to use as yet, and when I have people wonder what's going on in my office when they hear a weird, computerised voice coming from it!
I highly recommend the software, it has changed my life!
As mentioned I purchased my ZoomText from Quantum in Australia and their website is below.
Quantum Reading Learning Vision
Updates on Advanced Cell Trials!
As I have mentioned previously, Advanced Cell Technology are undertaking in stem cell research to treat Stargardt's disease. They have now successfully treated the first Stargardt's patient with embryonic stem cells, and have recently been approved by the Data and Safety Monitoring Board to proceed to treat a further two patients with Stargardt's.
This is fantastic news and we are one step closer to hopefully having a treatment. It is also a positive sign that the trial has been cleared to continue as the patient must have responded well to the first treatment, or at least it was not harmful! I am looking forward to more information on the trial as I'm sure all of you are. Check out Advanced Cell Technology's press release below.
ACT Press Release
This is fantastic news and we are one step closer to hopefully having a treatment. It is also a positive sign that the trial has been cleared to continue as the patient must have responded well to the first treatment, or at least it was not harmful! I am looking forward to more information on the trial as I'm sure all of you are. Check out Advanced Cell Technology's press release below.
ACT Press Release
Happy World Signt Day!!
Today is World Signt Day 2011 and it aims to raise awareness across the world of blindness, visual impairment and rehabilitation for the visually impaired. The day is also an advocacy event for "Vision 2020: The Right to Sight" which is a World Health Organization (WHO)and International Agency for the Prevention of Blindness initiative with the ideal goal to prevent blindness. Below is the infographic by Ultralase to promote World Sight Day and eye health.
The London Project
I have been told by several people to check out 'The London Project' as they are making strong progress in finding treatment for blindness. The organisation aims to cure blindness through stem cells, and with what I have learnt to date about Stargardt's, this seems to be the future in our treatment. Their main focus is on macular degeneration, but this could definitely lead to treatment for Stargardt's, as they are focusing on finding a way to replace the damaged RPE cells of the eye.
The London Project has finished the safety phases of its trials and will proceed to human clinical trials in 2012, which is very exciting news. Like Advanced Cell in the US, The London Project uses embryonic stem cells and hopefully success is in the near future.
The organization is currently asking for donations to make the next phase of trials happen. Anybody wishing to donate can do so on the link below.
The London Project
The London Project has finished the safety phases of its trials and will proceed to human clinical trials in 2012, which is very exciting news. Like Advanced Cell in the US, The London Project uses embryonic stem cells and hopefully success is in the near future.
The organization is currently asking for donations to make the next phase of trials happen. Anybody wishing to donate can do so on the link below.
The London Project
Moment of Truth
I have been putting this off for quite some time, but I thought I should get myself together and go to my optometrist to have a check up to see where my eyes are at. I also needed a new pair of glasses as the pair I currently wear are broken - I sat on them and my Dad did a botch glue job to 'fix' them and they are now wonky. So all in a all a visit to the optometrist was overdue.
I felt quite nervous because I didn't want to hear bad news. I had been feeling as though my eyes were deteriorating, that I couldn't see as well and things were getting harder. Going to the optometrist was a big deal for me.
My lovely Mum came along with me for moral support as I am known to have a breakdown or two, and she came in with me to do the testing. I really REALLY hate doing the eyes tests. I can never see anything and I get really frustrated trying to read the letters. Without my glasses the massive two letters on the first row are a big, blurry mess. So the test stresses me out a bit as I want so badly to be able to read the lines when I can't. My optometrist discovered that my eyes have become more shortsighted, so he was able to give me a stronger prescription to help me see in the distance slightly sharper and clearer, which I am excited about.
The great news is my eyes have not deteriorated in the last three years since I have seen him, which I am very lucky and thankful for. The only dampener was that my eyes really are rubbish and I am almost classified as legally blind, but if this is going to be it I sure can live with this and soldier on!
We had a big talk about the reality - driving, work in the future and possible pensions. The last thing I want is to be on a disability pension. I love my work and could not think of a day not being able to work. So I will cross that bridge later when I get to it, but I think its important that I am aware of what help is out there and have an understanding so if the need arose I would know what I have to do.
The main highlight of my visit was getting new glasses! I am so excited to get them! I purchased a new set of Oroton frames that I am in love with that are slightly bigger than your normal sized frames (yes I'm following the fashion trend) and I had an old Guess pair that I'm putting frames in as well.
I am very lucky to now know that my eyes are stable and fingers crossed they stay that way. At least I don't have to go back for testing for another few years!
I felt quite nervous because I didn't want to hear bad news. I had been feeling as though my eyes were deteriorating, that I couldn't see as well and things were getting harder. Going to the optometrist was a big deal for me.
My lovely Mum came along with me for moral support as I am known to have a breakdown or two, and she came in with me to do the testing. I really REALLY hate doing the eyes tests. I can never see anything and I get really frustrated trying to read the letters. Without my glasses the massive two letters on the first row are a big, blurry mess. So the test stresses me out a bit as I want so badly to be able to read the lines when I can't. My optometrist discovered that my eyes have become more shortsighted, so he was able to give me a stronger prescription to help me see in the distance slightly sharper and clearer, which I am excited about.
The great news is my eyes have not deteriorated in the last three years since I have seen him, which I am very lucky and thankful for. The only dampener was that my eyes really are rubbish and I am almost classified as legally blind, but if this is going to be it I sure can live with this and soldier on!
We had a big talk about the reality - driving, work in the future and possible pensions. The last thing I want is to be on a disability pension. I love my work and could not think of a day not being able to work. So I will cross that bridge later when I get to it, but I think its important that I am aware of what help is out there and have an understanding so if the need arose I would know what I have to do.
The main highlight of my visit was getting new glasses! I am so excited to get them! I purchased a new set of Oroton frames that I am in love with that are slightly bigger than your normal sized frames (yes I'm following the fashion trend) and I had an old Guess pair that I'm putting frames in as well.
I am very lucky to now know that my eyes are stable and fingers crossed they stay that way. At least I don't have to go back for testing for another few years!
Zoomtext!
My Zoom Text finally arrived today!!! I am very excited to get it to work tomorrow and load it up! I have been waiting for this software for such a long time so it is a great relief that I finally have it in my hot little hands!
I must thank Quantum for their help, they have been really helpful and so quick to respond to all my queries. Once I purchased the software they sent it straight away.
I'll keep you all posted on how it goes when I get it into work! I can't wait to read my computer screen with ease!
Check out Quantum, I strongly recommend them for all technology you might need!
Quantum
I must thank Quantum for their help, they have been really helpful and so quick to respond to all my queries. Once I purchased the software they sent it straight away.
I'll keep you all posted on how it goes when I get it into work! I can't wait to read my computer screen with ease!
Check out Quantum, I strongly recommend them for all technology you might need!
Quantum
Bookworm
I really enjoy reading, especially before bed, and have a recent goal of collecting many books to make a mini library. In the past few months, I have realised that it has become harder to read books, and I can no longer put the book closer to my face as it is already touching my nose. So I stopped reading and started watching more tv.
Not long later I signed up at my local library and discovered there was a "large print" section. I was so excited I could start reading again without having to strain my eyes. I started browsing through the shelves trying to find something interesting, but everything seemed like an old, romantic novel and nothing I was interested in. All the books seemed to be targeted at an older age group. What about me?! I have poor vision too and want to read! So I was left disappointed.
I then decided to do some googling to see if I could find anybody selling large font books. I looked up the major websites and found, once again, that almost all the books were aimed at the older generations. I was actually quite surprised I thought that at least the major novels would be printed in large font, but no.
Options to help reading would include reading on the computer where there is adaptive software to enlarge, or a screen reader, but this doesn't enable me to read in bed or lay in the sun and read. I thought possibly I could purchase an iPad and download books on there to enlarge, yet this is an expensive investment considering there are other things that I need as well.
I hope to find a place or a shop online that sells large text font in books that I'm interested and if anybody has a secret about this please share!
I am also seriously considering getting an iPad not only to help me read but also so I could play all my favourite games that I'm starting to struggle playing on my iPhone.
Until then, I will be tuned in to my tv (mind you it's 60 inches and I still can't see the thing properly!!).
Not long later I signed up at my local library and discovered there was a "large print" section. I was so excited I could start reading again without having to strain my eyes. I started browsing through the shelves trying to find something interesting, but everything seemed like an old, romantic novel and nothing I was interested in. All the books seemed to be targeted at an older age group. What about me?! I have poor vision too and want to read! So I was left disappointed.
I then decided to do some googling to see if I could find anybody selling large font books. I looked up the major websites and found, once again, that almost all the books were aimed at the older generations. I was actually quite surprised I thought that at least the major novels would be printed in large font, but no.
Options to help reading would include reading on the computer where there is adaptive software to enlarge, or a screen reader, but this doesn't enable me to read in bed or lay in the sun and read. I thought possibly I could purchase an iPad and download books on there to enlarge, yet this is an expensive investment considering there are other things that I need as well.
I hope to find a place or a shop online that sells large text font in books that I'm interested and if anybody has a secret about this please share!
I am also seriously considering getting an iPad not only to help me read but also so I could play all my favourite games that I'm starting to struggle playing on my iPhone.
Until then, I will be tuned in to my tv (mind you it's 60 inches and I still can't see the thing properly!!).
Update on the Bionic Eye
I have posted previously about the bionic eye and have some exciting updates.
A new microchip has been produced which will speed up the process toward the bionic eye, and I'm proud to say it's an Aussie organization leading the way - Bionic Vision Australia.
On the website, they also explain how the bionic eye will work:
"The high-acuity bionic eye will consist of a camera, attached to a pair of glasses which capture images and send them directly to a retinal implant, containing a microchip. The information is decoded by the microchip and informs the electrical stimulation of the retina. These signals are then passed along the optic nerve to the brain where they are interpreted as vision."
This is amazing stuff and will not only benefit Stargardt's patients but other more common eye conditions like macular degeneration.
I've been pondering this idea of becoming bionic woman for a while, although I never really understood how it would work. I kept telling people "it's something to do with a microchip in your eye" which actually sounds quite weird. Now I understand that it will incorporate glasses, hopefully a pair that you wear every day and not big, thick lensed goofy looking glasses! I'm guessing there will still involve some sorts of surgery to implant the microchip and then to connect it to the nerves. Medicine truly is amazing.
This is a diagram from the Bionic Vision Australia website explaining how the device will work.
Check out their website for more information and to see the picture clearer!
Bionic Vision Australia
A new microchip has been produced which will speed up the process toward the bionic eye, and I'm proud to say it's an Aussie organization leading the way - Bionic Vision Australia.
On the website, they also explain how the bionic eye will work:
"The high-acuity bionic eye will consist of a camera, attached to a pair of glasses which capture images and send them directly to a retinal implant, containing a microchip. The information is decoded by the microchip and informs the electrical stimulation of the retina. These signals are then passed along the optic nerve to the brain where they are interpreted as vision."
This is amazing stuff and will not only benefit Stargardt's patients but other more common eye conditions like macular degeneration.
I've been pondering this idea of becoming bionic woman for a while, although I never really understood how it would work. I kept telling people "it's something to do with a microchip in your eye" which actually sounds quite weird. Now I understand that it will incorporate glasses, hopefully a pair that you wear every day and not big, thick lensed goofy looking glasses! I'm guessing there will still involve some sorts of surgery to implant the microchip and then to connect it to the nerves. Medicine truly is amazing.
This is a diagram from the Bionic Vision Australia website explaining how the device will work.
Check out their website for more information and to see the picture clearer!
Bionic Vision Australia
Grandma Glasses
Normally I'd get embarrassed about them because I think I look like my grandma in them and no one my age has to wear tinted glasses!! But I realized who cares? This is one of the only things I was told that could protect my eyes - keeping the sun from them. So I've decided I'm going to bring the daggy style in fashion!! Anybody want to help?!?!
Thank You
You are all my inspiration just as much as I might be yours! Never give up on your dreams and what you have always wanted in life because this isn't going to stop you but rather make you even more determined to succeed!
Thank you again!!!!
Finally!
I have FINALLY received my magnifier! I purchased it from Quantum Reading Learning Vision in Sydney and I received it within a day! I am loving having my own Compact Plus I have been using at work and at home. I think a lot of people around the office are jealous of my new gadget! It has heaped me greatly with my everyday work so now I can read paper documents a lot easier.
It was hard to get use to at first as you have to move it across the page but once I got the hang of it I was loving it! My neck is thanking me as I no longer have to bend over to read things. I can not wait to get the rest of my stuff. It has taken a while but I have finally made progress!
This is me playing with my magnifier at work!
It was hard to get use to at first as you have to move it across the page but once I got the hang of it I was loving it! My neck is thanking me as I no longer have to bend over to read things. I can not wait to get the rest of my stuff. It has taken a while but I have finally made progress!
This is me playing with my magnifier at work!
Stuff I've learnt from Twitter!
I've been following the Foundation Fighting Blindness (@gihtblindness) on Twitter over the past few weeks. This weekend they have held Vision 2011 conference in the US. They have been updating their posts regularly and I have found out some interesting facts. The following are the tweets that I found really interesting:
1. "Q: animal trials - any reversal of vision loss 4 Stargardt? A: going that direction, but nothing yet showing definite restoration."
2. "Dr. Jacque Duncan (involved in retinal disease clinical trial) said that retinal degeneration is usually slow so it's hard to detect changes in 2-3 year studies."
3. "From Stem Cell session panel - Must easier to save retinal cells than replace them."
4. "Gen etc testing and thorough exams important because many diseases look alike.. Cone rod, Stargardt, Best Disease can look similar."
5. "About 50% of cone rod dystrophy caused by ABCA4 - same gene that causes majority of Stargardt disease."
4. A quote from John Wellner - "It's a great time in history to be blind; way better than the 1400's". You'd hope so!!
The link to the Foundation Fighting Blindness is below.
Foundation Fighting Blindness
They have a great wealth of information and are a great foundation so check it out.
1. "Q: animal trials - any reversal of vision loss 4 Stargardt? A: going that direction, but nothing yet showing definite restoration."
2. "Dr. Jacque Duncan (involved in retinal disease clinical trial) said that retinal degeneration is usually slow so it's hard to detect changes in 2-3 year studies."
3. "From Stem Cell session panel - Must easier to save retinal cells than replace them."
4. "Gen etc testing and thorough exams important because many diseases look alike.. Cone rod, Stargardt, Best Disease can look similar."
5. "About 50% of cone rod dystrophy caused by ABCA4 - same gene that causes majority of Stargardt disease."
4. A quote from John Wellner - "It's a great time in history to be blind; way better than the 1400's". You'd hope so!!
The link to the Foundation Fighting Blindness is below.
Foundation Fighting Blindness
They have a great wealth of information and are a great foundation so check it out.
A 4 year old could colour in better than me!
I spent my afternoon at work making some artistic labels for my folders, and decided to do some block writing with a highlighter border around the letters. To my horror, I couldn't see the lines I was trying to colour within! I drew the letters with difficulty then used my permanent marker to make them bold, and I was colouring in worse than I used to in kindergarten! I missed spots and went out of the lines and it looked terrible! I then tried to colour around the letters in pink but found that wasn't working for me either. So instead I just coloured over the whole thing.
Luckily I saw the humour in the fact I can no longer colour anything in! Well not within the lines anyway! I laughed to myself for a while and was quite proud of my finished product after it made me feel as though I was cross eyed! If anybody asks, though, I might have to say my little cousin did t!
Everyday I find little things that have gotten harder to do, but in the scheme of things is it really a big deal if I can't colour in perfectly? Maybe I can be the new Picasso and take abstract to a whole new level!
Keep smiling everyone :)
Luckily I saw the humour in the fact I can no longer colour anything in! Well not within the lines anyway! I laughed to myself for a while and was quite proud of my finished product after it made me feel as though I was cross eyed! If anybody asks, though, I might have to say my little cousin did t!
Everyday I find little things that have gotten harder to do, but in the scheme of things is it really a big deal if I can't colour in perfectly? Maybe I can be the new Picasso and take abstract to a whole new level!
Keep smiling everyone :)
Update on the ACT embryonic stem cell trials
So we are all aware of the upcoming trials by Advanced Cell Technology to see whether Stargardt's and also Dry Age Related Macular Degeneration can be treated with embryonic stem cells. ACT released more information a few days ago about the upcoming trials involving 12 patients for each condition.
The phase of the study isn't actually testing whether using the stem cells will have any benefit, rather on the safety of using such technology.
The am of the treatment is to replace the malfunctioning RPE cells in the macular with functioning cells to halt the damage being done.
Hopefully the first phrase of the trials are successful and safe, with minimal harm being placed on the brave Stargardt's patients being involved.
Check out more information on the links below.
Red Orbit
UK Mail online
Google News
The phase of the study isn't actually testing whether using the stem cells will have any benefit, rather on the safety of using such technology.
The am of the treatment is to replace the malfunctioning RPE cells in the macular with functioning cells to halt the damage being done.
Hopefully the first phrase of the trials are successful and safe, with minimal harm being placed on the brave Stargardt's patients being involved.
Check out more information on the links below.
Red Orbit
UK Mail online
Google News
Istilah dalam Farmakologi
n Farmakologi adalah ilmu yang mempelajari pengetahuan obat dengan seluruh aspeknya, baik sifat kimiawi, fisika, kegiatan fisiologi, resorpsi dan nasibnya dalam organisme hidup
n Farmakognosi : cabang ilmu yang mempelajari sifat-sifat tumbuhan, mineral dan hewan yang merupakan sumber obat.
n Biofarmasi : cabang ilmu yang mempelajari pengaruh pembuatan sediaan farmasi terhadap efek terapeutik obat.
n Farmaceutical availability (ketersediaan farmasi) : ukuran waktu yang diperlukan oleh obat untuk melepaskan diri dari bentuk sediaannya dan siap untuk proses absorpsi.
n Biological availability (ketersediaan hayati) : prosentasi obat yang diresorpsi tubuh dari suatu dosis yang diberikan dan tersedia untuk melakukan efek terapetiknya.
n Therapeutical equivalent (kesetaraan terapeutik) : syarat yang harus dipenuhi oleh suatu obat yang meliputi kecepatan melarut dan jumlah kadar zat yang berkhasiat yang harus dicapai dalam darah
n Bioassay : cara menentukan aktivitas obat dengan menggunakan hewan percobaan seperti kelinci, tikus, dll.
n Farmakokinetik : segala proses yang dilakukan tubuh terhadap obat berupa absorpsi, distribusi, metabolisme dan ekskresi.
n Farmakodinamik : mempelajari kegiatan obat terhadap organisme hidup terutama cara dan mekanisme kerjanya, reaksi fisiologi, serta efek terafi yang ditimbulkan.
n Toksikologi : pengetahuan tentang efek racun dari obat terhadap tubuh.
n Farmakoterapi : mempelajari penggunaan obat untuk mengobati penyakit atau gejalanya. Phytoterapi : menggunakan zat-zat dari tanaman untuk mengobati penyakit.
n Farmakologi klinik : cabang farmakologi yang mempelajari efek obat pada manusia.
iPhone Magnifiers
I am constantly on my phone and download new apps every day. I'm also constantly texting and for a while now have been having trouble seeing the text on my phone!
Having an iphone has been a great benefit for me. I finally figured out how to make the text message font larger, and I am currently on the 20pt text which is only the first magnification and it goes right up to 56pt. I could probably use it a bit larger, but I can't face that fact yet!!
I've also found a few apps that magnify text using the camera on the back of the phone. I currently have "Tap Magnify" and "Easy Reader". I personally prefer the "Easy Reader" as it uses most of the screen and uses the flash to illuminate the text when it magnifies. The only thing is it is quite slow to focus. Since I am still waiting on my equipment this is an easy alternative until I get a proper hand held magnifier. Best of all they were both free!!
Has anybody else found any apps useful?
Having an iphone has been a great benefit for me. I finally figured out how to make the text message font larger, and I am currently on the 20pt text which is only the first magnification and it goes right up to 56pt. I could probably use it a bit larger, but I can't face that fact yet!!
I've also found a few apps that magnify text using the camera on the back of the phone. I currently have "Tap Magnify" and "Easy Reader". I personally prefer the "Easy Reader" as it uses most of the screen and uses the flash to illuminate the text when it magnifies. The only thing is it is quite slow to focus. Since I am still waiting on my equipment this is an easy alternative until I get a proper hand held magnifier. Best of all they were both free!!
Has anybody else found any apps useful?
Help with Adaptive Technology
I've decided to try and organise purchasing my own adaptive technology for work and studying as I seem to just not be able to make it happen any other way. Since I am in between jobs, I find it really hard explaining to new or prospective employers about the condition and what I need to help me work. I also sometimes feel that some workplaces see it as a hindrance, so if I can have all my equipment and bring it in on day one, it just seems so much easier.
One thing I am really looking forward to getting is a hand held CCTV. I am also super keen to purchase one to help me with studying, as reading my textbooks are like torture and I constantly get a sore neck (which serves as a great excuse to get a massage). I was lucky to have Vision Australia lend me one to try out previously and have picked the Compact Plus mostly because it has a big screen and can magnify up to 10 times.
Quantum based in Sydney, provides such equipment and the one that I am keen to get my hands on. Not only do they have my CCTV but also ZoomText and other adaptive technology like larger CCTV monitors and equipment that converts text to speech.
At the moment there are only a few things that I feel I need to help me feel more comfortable at work, yet this website has so many other gadgets and software that would be beneficial in the future for me and would be beneficial to those who are at a later stage of the disease.
Check out their website. They are very helpful!!
Quantum Adaptive Technology
One thing I am really looking forward to getting is a hand held CCTV. I am also super keen to purchase one to help me with studying, as reading my textbooks are like torture and I constantly get a sore neck (which serves as a great excuse to get a massage). I was lucky to have Vision Australia lend me one to try out previously and have picked the Compact Plus mostly because it has a big screen and can magnify up to 10 times.
Quantum based in Sydney, provides such equipment and the one that I am keen to get my hands on. Not only do they have my CCTV but also ZoomText and other adaptive technology like larger CCTV monitors and equipment that converts text to speech.
At the moment there are only a few things that I feel I need to help me feel more comfortable at work, yet this website has so many other gadgets and software that would be beneficial in the future for me and would be beneficial to those who are at a later stage of the disease.
Check out their website. They are very helpful!!
Quantum Adaptive Technology
Istilah yang sering jumpa pada obat dan farmasi
BSO = Bentuk Sediaan Obat
BS = Bentuk Sediaan
Inst. Fa.RS = Instalasi Farmasi Rumah Sakit
SO = Sediaan Obat
P = Pediatrik (Anak-anak)
A = Adult (dewasa)
F = Forte (Fortior = penuh, lebih besar)
G = Geriatric (orang lanjut usia)
Syr = Syrupus
Cap = Capsula
Capl = Caplet (tablet berupa capsul)
Dry syr = Sirup kering
DS = Double strength (kekuatan belipat ganda)
SR = Sustained release (lepas lambat)
Eye drops = Tetes mata
Ear drops = Tetes telinga
Nasal drops = Tetes hidung
Oculenta = Salap mata
Top = Topikal (Kulit)
Unguenta = Zalaft, salap, salep
Epithema = Obat kompres kulit (topikal)
Gargarisma = Collutorium, obat kumur
Antidote = Penawar racun
Antiseptic = Antiseptis, pemusnah hama
Derivate = Turunan, generasi
Granule = Butir, butiran
Retention = Retensi, tambatan, tertahan
Enteral = saluran pencernaan
Pan-enteral = diluar saluran pencernaan.
Per-oral = melalui mulut terus ke aesofagus dan saluran
pencernaan.
Inplantasi = penggunaan obat dibawah kulit (menanam, mendepot)
dengan membedah bagian kecil kulit secara steril
OBAT PALSU
Obat palsu adalah yang dengan sengaja dan curang diberi label identitas dan/atau sumber yang salah. Menurut WHO, terdapat beberapa tipe obat palsu yang semuanya membahayakan keamanan pasien. Obat palsu ini dapat dikelompokkan menkadi kategori yang berbeda.
Tipe-tipe obat palsu :
1. Produk tanpa bahan aktif
2. Produk dengan bahan aktif yang kurang kadarnya
3. Produk dengan bahan aktif yang tidak benar
4. Produk dengan bahan aktif dalam jumlah yang tepat namun nama yang tercantum berbeda perusahaan dan/atau negara yang memproduksi obat tersebut.
Hal-hal yang perlu diperhatikan dalam mengenali obat palsu :
1. Dimana anda membeli obat tersebut à harus dari sumber yang dikenal dan apotek terdaftar
2. Apa yang harus anda cek ketika membeli obat à kemasan, produk dan tanggal kadaluarsa
3. Bagaimana efek obat yang diharapkan
Cara yang paling baik untuk menghindari obat palsu adalah membeli obat dari apotek yang memiliki reputasi dan sudah dikenal. Hindari pembelian dari toko obat yang tidak terdaftar secara resmi.
Penatalaksanaan Penyakit Kardiovaskuler
(Dr Idrus Alwi , SpPD(K)KV (RSCM))
Menurut data WHO penyebab utama kematian didunia adalah penyakit jantung koroner yang diderita oleh 3,8 juta pria dan 3,4 juta wanita.
Hubungan Hiperlipidemia dengan kardiovaskuler
Peningkatan kolesterol akan memicu artherosclerosis à tumpukan lemak à pecah à menimbulkan lumenà serangan jantung.
Pemicu Artheroclerosis :
Faktor resiko : kolesterol tinggi, DM, hipertensi
Makin tinggi kolesterol LDL makin tinggi resiko penyakit jantung koroner
LDL turun 1 mg à resiko jantung koroner turun 1 %
Makin banyak kolesterol HDL makin turun resiko penyakit jantung
Peningkatan HDL 1 mg menurunkan resiko jantung koroner sebanyak 3 %
Pedoman penatalaksanaan
Sasaran utama : menurunkan kolesterol LDL
Perubaha gaya hidup : olahraga
Faktor resiko penyebab CHD
- Hipertensi
- Kolesterol
- Riwayat penyakit jantung : pria < 55 tahun wanita <65 tahun
- Diabetes
Pasien yang menderita diabetes resiko untuk terjadi penyebab penyakit jantung tinggi à LDL harus dibawah 100mg/dl
Resiko tinggi penyakit kardiovaskuler
Sudah ada riwayat penyakit jantung koroner ditambah dengan diabetes à LDL < 70 mg/dl.
TERAPI DM YANG EFEKTIF, SELEKTIF DAN PROTEKTIF
(Dr Irman Firmansyah, SpPD)
Definisi
Diabetes adalah kumpulan gejala yang ditandai dengan kadar gula meningkat akibat gangguan insulin
Kriteria DM tahun 2010
- 2 jam PP ≥ 200 mg/dl
DM Ã penyebab utama penyakit gagal ginjal
Penatalaksanaan Diabetes
Nutrisi 
edukasi
latihan obat antidiabet efektif selektif proefektif
Nutrisi à diit bukan berarti mengurangi makan tetapi mengatur diit makan sesuai dengan aturan diit oleh ahli gizi.
Pengobatan diabetes tidak harus dengan obat à yang utama adalah mengubah pola hidup
Pengobatan pertama pada DM Ã dosis tunggal dan dosis paling rendah
Hubungan antara DM, Kardiovaskuler dan gagal ginjal
- Pasien diabetes mempunyai resiko kejadian kardiovaskuler yang lebih tinggi
- Pasien diabetes tanpa riwayat CHD memiliki resiko kematian yang sebanding dengan CHD
- Diabetes dan penyakit kronis ginjal (CKD) Ã Pasien diabetes mempunyai resiko CKD yang meningkat sejalan dengan waktu, dengan kira-kira 1/3 pasien akhirnya menderita CKD
Pengobatan
- Tidak terjadi penyakit kardiovaskuler à Target utama menurunkan menurunkan kolesterol LDL
- Statin merupakan pilihan utama karena memiliki Evidance Base yang terbaik
- Peran statin à menurunkan kadar kolesterol 40%
- Atorvastatin à tidak hanya menurunkan kolesterol à bisa menurunkan resiko kardiovaskuler sebesar 16%
- Keamanan statin untuk pengobatan jangka panjang à aman untuk gangguan liver, renal
- Pengobatan dengan menggunakan golongan statin terutama atorvastatin pada CHD memberikan manfaat lebih banyak untuk pasien Diabetes.
- Atorvastatin menunjukkan penurunan resiko kardiovaskuler yang mengagumkan pada pasien dengan diabetes.
- Atorvastatin menurunkan risiko major CV events pada pasien diabetes tanpa CHD sebanyak 37%
Natonal Kidney Foundation pada tahun 2007 merekomendasikan :
| STATIN | Dosis Pada CKD |
| Atorvastatin Fluvastatin Lovastatin Pravastatin Rosuvastatin Simvastatin | Tidak perlu ada penyesuaian dosis Tidak perlu penyesuaian dosis untuk penyakit ginjal ringan-sedang Penggunaan hati-hati pada penyakit gagal ginjal berat. Belum ada penelitian pada dosis > 40mg Pasien dengan CCr < 30 ml/menit, dosis > 20mg/hari harus hati-hati Tidak perlu ada penyesuaian dosis Tidak perlu ada modifikasi dosis untuk pasien dengan penyakit ginjal ringan-sedang Dosis dimulai dengan 5 mg dan tidak lebih dari 10mg/hari untuk CCr < 30 ml/menit/1.73m2, tidak sedang menjalani hemodialisa Pasien dengan penyakit ginjal berat, dosis dapat dimulai 5mg/hari |
Zinc Untuk Influenza, Sangat Bermanfaat Jika Diberikan Dalam 24 Jam Pertama Dari Munculnya Gejala
Influenza biasa sering disebabkan oleh Rhinovirus. Ini adalah salah satu penyakit yang paling luas dan merupakan penyebab utama kunjungan ke dokter dan ketidakhadiran dari sekolah dan bekerja. Komplikasi dari influenza termasuk otitis media (infeksi telinga tengah), sinusitis dan eksaserbasi penyakit saluran napas. Tidak ada pengobatan terbukti manjur untuk influenza ini. Namun, obat yang bahkan sebagian efektif untuk pengobatan dan pencegahan influenza secara bermaknadapat mengurangi kesakitan dan kerugian ekonomi akibat penyakit ini.
Zing menghambat replikasi Rhinovirus dan telah diuji dalam uji coba untuk pengobatan influenza. Review ini mengidentifikasi 15 studi dengan disain terkontrol secara acak, yang melibatkan sebanyak 1.360 peserta dari semua kelompok umur, membandingkan zinc dengan plasebo (tanpa zinc). Kami menemukan bahwa zinc (lozenges ataupun sirup) bermanfaat dalam mengurangi durasi dan tingkat keparahan pilek pada orang sehat, ketika diberikan dalam waktu 24 jam dari timbulnya gejala.
Orang yang mengkonsumsi zinc juga lebih cenderung memiliki gejala influenza yang menetap lebih rendah mereka di luar tujuh hari pengobatan. suplemen zinc setidaknya selama lima bulan mengurangi insiden, absensi sekolah dan peresepan antibiotik untuk anak-anak dengan influenza. Orang yang memakai zinc dengan sediaan lozenges lebih mungkin mengalami efek samping, termasuk gangguan pengecap dan mual. Karena tidak ada penelitian pada setiap partisipan influenza dengan penyulit (misalnya, mereka dengan penyakit kronis yang mendasarinya, imunodefisiensi, asma, dll.), penggunaan zinc saat ini tidak dapat direkomendasikan untuk mereka. Mengingat variabilitas dari populasi yang dipelajari (ada penelitian dari negara berpenghasilan rendah atau), dosis, formulasi dan durasi dari zinc yang digunakan dalam studi meliputi, penelitian lebih lanjut diperlukan untuk mengatasi variabilitas dan menentukan durasi pengobatan yang optimal serta dosis dan formulasi zinc yang akan memberikan manfaat klinis secara optimal tanpa meningkatkan efek samping, sebelum membuat rekomendasi umum untuk zinc dalam pengobatan influenza. Seperti yang disimpulkan dalam review yang dipublikasikan dalam The Cochrane tahun 2011 baru-baru ini.
Kalbe.co.id
Makanan Banyak Mengandung vitamin B Mungkin Menurunkan Risiko Keluhan PMS (Pre-Menstrual Syndrome)
Wanita yang mengkonsumi makanan kaya vitamin B mempunyai risiko premenstrual syndrome (PMS) lebih rendah, kata para peneliti. Wanita yang mengkonsumsi makanan banyak mengandung vitamin B seperti bayam dan sereal yang diperkaya dengan vitamin B memiliki risiko 25% lebih rendah menderita keluhan PMS, menurut penelitian yang diterbitkan American Journal of Clinical Nutrition secara online bulan Februari 2011. Keluhan PMS berat yang mempengaruhi sekitar satu dari enam wanita, kadang kala diobati dengan baik pil KB atau antidepresan, kata Bertone-Johnson, yang turut menulis penelitian. Mengurangi kemungkinan PMS dengan diet mungkin menjadi alternatif untuk beberapa perawatan, yang mahal dan dapat memiliki efek samping, katanya.
Para peneliti mengamati pola makan lebih dari 3000 wanita yang telah mengisi survei makanan tiga kali lebih dari 10 tahun. Selama waktu ini, sekitar 1000 perempuan mengalami gejala PMS sedang hingga berat seperti kecemasan, depresi, iritabilitas, sakit perut, kelelahan dan kembung. The Institute of Medicine merekomendasikan wanita dewasa makan masing-masing 1,1 miligram tiamin dan riboflavin per hari. Tetapi para peneliti menemukan bahwa jumlah yang lebih tinggi diperlukan untuk menunjukkan manfaat, Bertone-Johnson mengatakan. Perempuan yang melaporkan makan sekitar 1,9 mg thiamin per hari kurang cenderung memiliki keluhan PMS,sekitar dua dari lima PMS dibandingkan dengan tiga dari lima wanita yang mengkonsumsi sekitar 1,2 mg/hari. Angka-angka ini realtif sama untuk wanita yang mengkonsumsi sekitar 2,5 mg riboflavin perhari dibandingkan dengan wanita yang mengkonsumsi sekitar 1,4 mg per hari. Dan Hal ini mudah dilakukan untuk mengkonsumsi makanan banyak dan riboflavin tiamin sehari, Bertone-Johnson mengatakan. Itu sekitar dua sampai tiga mangkuk sereal difortifikasi, tiga perempat cangkir kacang kering, atau sekitar tiga ons daging merah.
Sekitar satu hingga dua mangkuk sereal difortifikasi yang banyak mengandung riboflavin, atau tiga-ons hati sapi. Hal inilah pertama kalinya bahwa nutrisi makanan dikaitkan dengan risiko keluhan PMS, kata Dr. Ellen Freeman, profesor kebidanan/ginekologi dan psikiatri di University of Pennsylvania di Philadelphia. "Ini menunjukkan bahwa vitamin B mungkin memiliki peran dalam menurunkan gejala" dari PMS, Dr Freeman, yang tidak terlibat dalam penelitian ini. Terlepas dari kenyataan bahwa PMS telah dipelajari selama beberapa dekade, tidak ada yang benar-benar tahu apa penyebabnya, Bertone-Johnson mengatakan. Suplemen - yang dalam studi tidak diketemukan kaitannya dengan gejala PMS - adalah cara yang populer untuk mengobati PMS, meskipun tidak ada bukti mereka efektif, menurut National Institutes of Health.
Kalbe.co.id
MANTOUX TEST
DEFINISI
Uji tuberkulin (tuberculin skin test/TST) merupakan alat diagnostik yang sampai saat ini mempunyai sensitivitas dan spesifisitas cukup tinggi untuk mendiagnosis adanya infeksi tuberkulosis. Pertama kali Robert Koch membuat filtrat dari kultur Mycobacterium tuberculosis dengan tujuan sebagai terapi. Pada penerapannya, tenyata pemberian tuberkulin yang bertujuan menyembuhkan menimbulkan reaksi sistemik seperti demam, nyeri otot, mual dan muntah sedangkan mereka yang tidak sakit tidak menunjukkan reaksi tersebut. Akhirnya pada perkembangannya tuberkulin digunakan sebagai alat diagnostik dengan mengaplikasikannya secara lokal untuk mencegah reaksi sistemik.
Test mantoux adalah suatu cara yang digunakan untuk mendiagnosis TBC. Tes mantoux itu dilakukan dengan menyuntikan suatu protein yang berasal dari kuman TBC sebanyak 0,1ml dengan jarum kecil di bawah lapisan atas kulit lengan bawah kiri.
TUJUAN
Tujuan dari tes mantoux ini adalah sebagai salah satu cara untuk mendiagnosis infeksi TBC. Kenapa salah satu? Karena ternyata tidak mudah untuk mendiagnosis TBC sehingga perlu banyak faktor untuk mengetahui pasti bahwa seseorang memang terinfeksi TBC dan harus menjalani pengobatan. Hasil tes Mantoux saja tidak bisa digunakan untuk menegakkan diagnosis karena kadang hasil tes ini memberikan hasil negatif palsu atau positif palsu. Hasil pemeriksaan tes mantoux ini harus didukung dengan keluhan, pemeriksaan fisik, serta pemeriksaan laboratorium yang ada.
LOKASI DAN CARA PENYUNTIKAN TEST MANTOUX
Lokasi penyuntikan tes mantoux umumnya adalah pertengahan bagian atas, lengan bawah kiri bagian depan. Penyuntikan dilakukan intrakutan (ke dalam kulit).
PRINSIP DASAR
Setelah seseorang terinfeksi kuman mycobacteria, sel limfosit T akan berproliferasi dan menjadi tersensitisasi. Sel T yang tersensitisasi masuk ke dalam aliran darah dan bersirkulasi selama berbulan-bulan atau bertahun-tahun. Proses sensitisasi ini terjadi pada kelenjar getah bening regional dan memerlukan waktu 2-12 minggu setelah infeksi. Sekali terinfeksi, maka sensitisasi terhadap tuberkulin akan menetap. Injeksi tuberkulin pada kulit akan menstimulasi sel-sel limfosit dan terjadi aktivasi rentetan kejadian yang termasuk dalam respon hipersensitivitas tipe lambat (delayed-type hypersensitivity/DTH). Respons ini dikatakan lambat oleh karena reaksi memerlukan waktu berjam-jam. Reaktivitas kulit mencakup vasodilatasi, edema, infiltrasi sel-sel limfosit, basofil, monosit dan netrofil ke lokasi suntikan. Antigen-spesific limfosit T akan berproliferasi dan melepaskan limfokin, yang akan mengundang akumulasi sel-sel alin ke lokasi suntikan. Terjadilah indurasi yang mencerminkan aktivitas DTH. Pada pasien yang sudah pernah terinfeksi, DTH muncul setelah 5-6 jam dan kebanyakan mencapai indurasi maksimal 48-72 jam.
PROSES PENYUNTIKAN TEST MANTOUX
I. TES BAYI BARU LAHIR
Bila saat mengandung si ibu menderita TBC bisa saja bayi akan terkena TBC begitu dilahirkan. Ini disebut dengan TBC kongenital dan bayi harus segera dites Mantoux pada usia sekitar 1 bulan. Usahakan jangan di bawah 1 bulan karena dapat memberi reaksi negatif meski boleh jadi si bayi tersebut menderita TBC. Itu karena sistem imun bayi usia ini masih belum baik. Kendati kasusnya sangat jarang ditemui, setidaknya orangtua dapat segera mengatasinya bila bayinya memang positif TBC.
II. TES PADA ANAK
Tes Mantoux dilakukan dengan cara menyuntikkan protein dari kuman Mycobacterium tuberculosis pada lengan bawah anak. Agar hasilnya akurat, penyuntikannya harus benar-benar teliti. Bahan yang dimasukkan harus dengan dosis tepat dan masuk sepenuhnya ke dalam kulit, bukan di bawah kulit. Kemudian, reaksi yang dihasilkan harus dibaca tepat waktu.
Untuk memastikan anak terinfeksi kuman TBC atau tidak, akan dilihat indurasinya setelah 48-72 jam. Indurasi ini ditandai dengan bentuk kemerahan dan benjolan yang muncul di area sekitar suntikan. Bila nilai indurasinya 0-4 mm, maka dinyatakan negatif. Bila 5-9 mm dinilai meragukan, sedangkan di atas 10 mm dinyatakan positif.
Setelah hasil Mantoux dinyatakan positif, anak sebaiknya diikutkan pada serangkaian pemeriksaan lainnya. Salah satunya adalah rontgen yang bertujuan mendeteksi TBC lebih detail lewat kondisi paru yang tergambar dalam foto rontgen dan dan tes darah. Tes mantoux dilakukan lebih dulu karena hasil rontgen tidak dapat diandalkan untuk menentukan adanya infeksi kuman TB. Bercak putih yang mungkin terlihat pada hasil foto bisa memiliki banyak penyebab. Anak yang sedang menderita batuk pilek pun kemungkinan memiliki bercak putih di paru. Jadi, tes Mantoux sangat perlu, tak cukup hanya rontgen paru.
Untuk mendapatkan diagnosis tepat, tes Mantoux dilakukan jika anak menujukkan gejala-gejala berikut:
a. MMBB (Masalah Makan dan Berat Badan)
Bila anak sulit makan dan memiliki berat badan yang kurang dari rata-rata anak seusianya, orangtua patut waspada. Atau, ada peningkatan berat badan tapi tak sesuai atau masih di bawah jumlah yang semestinya (tidak sesuai dengan yang tertera pada KMS/Kartu Menuju Sehat).
b. Mudah sakit
Anak sakit batuk pilek wajar saja. Bedanya, anak yang terinfeksi TB akan lebih mudah tertulari penyakit. Jika orang di lingkungan sekitarnya batuk pilek, anak mudah tertulari atau sebulan sekali mesti sakit. Kondisi ini patut mendapat perhatian.
c. Lemah, letih, lesu dan tidak bersemangat dalam melakukan aktivitas
Anak-anak dengan TB, umumnya terlihat berbeda dari anak kebanyakan yang sehat dalam beraktivitas. Ia tampak lemah, lesu dan tidak bersemangat.
d. Reaksi cepat BCG
Pada lokasi suntik vaksin BCG akan timbul tanda menyerupai bisul. Jika reaksi ini muncul lebih cepat, misalnya seminggu setelah pemberian, berarti tubuh anak sudah terinfeksi TB. Padahal normalnya, tanda itu paling cepat muncul pada 2 minggu setelah anak divaksinasi BCG. Namun rata-rata, benjolan pada kulit muncul setelah 46 minggu.
e. Batuk berulang
Batuk berkepanjangan merupakan gejala yang paling dikenal di kalangan masyarakat sebagai pertanda TBC. Batuk yang awalnya berupa batuk kering kemudian lama-kelamaan berlendir dan berlangsung selama 2 minggu lebih, merupakan salah satu tanda TBC. Gejala ini akan muncul bila sudah terdapat gangguan di paru-paru. Hanya saja, bedakan dari batuk alergi dan asma.
f. Benjolan di leher
Pembesaran kelenjar getah bening di leher samping dan di atas tulang selangkangan bisa saja merupakan tanda TBC. Karena , kelenjar getah bening merupakan salah satu benteng pertahanan terhadap serangan kuman. Kelenjar ini akan membesar bila diserang kuman. Namun, meski merupakan salah satu gejala TB, tidak semua pembengkakan kelenjar getah bening adalah gejala penyakit TB. Bisa jadi pembengkakan itu karena adanya infeksi atau radang di tenggorokan.
g. Demam dan berkeringat di malam hari
Gejala awal TBC biasanya muncul demam pada sore dan malam hari, disertai keluarnya keringat. Gejala ini dapat berulang beberapa waktu kemudian. Namun hal ini tetap belum dapat memastikan kalau anak menderita TBC. Tidak selalu anak-anak yang berkeringat di malam hari menderita TB. Keringat tidur justru merupakan pertanda sistem metabolisme yang sedang aktif bekerja. Tak heran, pada saat tidurlah anak-anak mengalami metabolisme yang pesat.
h. Diare persisten
Diare akibat TBC biasanya tidak kunjung sembuh dengan pengobatan biasa. Sebagai orangtua, kita bisa membantu dokter untuk menjelaskan apakah gejala-gejala di atas memang muncul pada anak atau tidak; berapa lama berlangsungnya, dan seberapa sering gejala-gejala tersebut muncul. Dari pengamatan kita sehari-hari, dokter akan sangat terbantu untuk mendiagnosis penyakit anak serta memutuskan apakah perlu dijalani tes Mantoux atau tidak.
CARA MELAKUKAN UJI TUBERKULIN METODE MANTOUX (TES MANTOUX)
1. Siapkan 0,1 ml PPD ke dalam disposable spuit ukuran 1 ml (3/8 inch 26-27 gauge)
2. Bersihkan permukaan lengan volar lengan bawah menggunakan alcohol pada daerah 2-3 inch di bawah lipatan siku dan biarkan mengering
3. Suntikkan PPD secara intrakutan dengan lubang jarum mengarah ke atas. Suntikan yang benar akan menghasilkan benjolan pucat, pori-pori tampak jelas seperti kulit jeruk, berdiameter 6-10 mm
4. Apabila penyuntikan tidak berhasil (terlalu dalam atau cairan terbuang keluar) ulangi suntikan pada tempat lain di permukaan volar dengan jarak minimal 4 cm dari suntikan pertama.
5. Jangan lupa mencatat lokasi suntikan yang berhasil tersebut pada rekam medis agar tidak tertukar saat pembacaan. Tidak perlu melingkari benjolan dengan pulpen/spidol karena dapat mengganggu hasil pembacaan.
Catatan
a. Perhatikan cara penyimpanan PPD sesuai petunjuk pada kemasan
b. PPD aman bagi bayi berapapun usianya bahkan aman pula bagi wanita hamil
c. Tes Mantoux bukan merupakan kontra indikasi bagi:
- Pasien yang pernah diimunisasi BCG
- Pasien yang pernah dilakukan tes Mantoux sebelumnya dan hasilnya positif (dalam hal ini pengulangan diperlukan karena hasil tes Mantoux sebelumnya tidak tercatat dengan baik)
- Pasien sedang dalam kondisi demam, sakit, maupun pasien dengan imunokompromais
d. Adanya parut yang besar pada bekas tes Mantoux sebelumnya merupakan petunjuk hasil positif pada tes terdahulu dan tidak perlu diulang. Namun perlu ditekankan bahwa tes Mantoux menggunakan PPD dan bukan vaksin BCG.
Pembacaan
1. Hasil tes Mantoux dibaca dalam 48-72 jam, lebih diutamakan pada 72 jam
- Minta pasien control kembali jika indurasi muncul setelah pembacaan
- Reaksi positif yang muncul setelah 96 jam masih dianggap valid
- Bila pasien tidak control dalam 96 jam dan hasilnya negative maka tes Mantoux harus diulang.
2. Tentukan indurasi (bukan eritem) dengan cara palpasi
3. Ukur diameter transversal terhadap sumbu panjang lengan dan catat sebagai pengukuran tunggal
4. Catat hasil pengukuran dalam mm (misalnya 0 mm, 10 mm, 16 mm) serta catat pula tanggal pembacaan dan bubuhkan nama dan tandatangan pembaca
5. Apabila timbul gatal atau rasa tidak nyaman pada bekas suntikan dapat dilakukan kompres dingin atau pemberian steroid topikal
Catatan:
Reaksi hipersensitivitas terhadap tuberkulin yang munculnya cepat (immediate hypersensitivity reactions) dapat timbul segera setelah suntikan dan biasanya menghilang dalam 24 jam. Hal ini tidak mempunyai arti dan bukan menunjukkan hasil yang positif.
INTERPRETASI TEST MANTOUX
Tes Mantoux dinyatakan positif apabila diameter indurasi > 10 mm. Kemungkinan yang perlu dipikirkan pada anak dengan hasil tersebut:
a. Terinfeksi tuberkulosis secara alamiah
b. Infeksi TB mencakup infeksi TB laten, sakit TB aktif, atau pasca terapi TB.
c. Pernah mendapat imunisasi BCG (pada anak dengan usia kurang dari 5 tahun)
d. Pada pasien usia kurang dari 5 tahun dengan riwayat vaksinasi BCG kecurigaan ke arah infeksi alamiah TB bila hasil uji Mantoux > 15 mm.
e. Infeksi mikobakterium atipik
Meskipun demikian, hasil uji Mantoux > 5 mm dapat dipertimbangkan positif pada pasien tertentu seperti :
a. Pasien dengan infeksi HIV
b. Pasien dengan transplantasi organ atau mendapat imunosupresan jangka panjang seperti pasien keganasan atau sindrom nefrotik
False Negative
Pasien-pasien tertentu yang terinfeksi tuberkulosis mungkin dapat menunjukkan hasil tes Mantoux yang negatif. Kondisi demikian disebut dengan anergi. Anergi kemungkinan terjadi pada pasien:
- Berbagai faktor indvidual seperti usia, nutrisi, gagal ginjal, imunosupresi karena obat (seperti kortikosteroid) atau penyakit (seperti kanker, infeksi HIV, dan sarcoidosis)
- Infeksi virus (seperti Campak,Mumps, Rubella, mononucleosis, Varicella, dan influenza) dapat menurunkan reaktivitas tuberkulin selama beberapa bulan
- Setelah vaksinasi dengan vaksin virus hidup (seperti Campak, Mumps, Rubella) akan teramati penurunan reaktivitas tuberkulin. Oleh sebab itu, jika uji mantoux tidak dapat dilakukan bersamaan dengan imunisasi Campak, Mumps, dan Rubella, uji ditunda selama 4-6 minggu
- Pasien dengan sakit TB berat seperti TB milier, meningitis TB
Mengingat masa yang diperlukan untuk terbentuknya cellular mediated immunity sejak masuknya kuman TB adalah 2-12 minggu maka hasil negatif pada pasien dengan kontak erat penderita TB dewasa masih mungkin pasien sedang dalam masa inkubasi.
PENYIMPANAN
PPD RT 23 harus disimpan pada suhu antara +2oC dan +8oC. Terlindung dari cahaya. Jangan Dibekukan
Setelah Dibuka, isi vial harus digunakan dalam 24 jam. Setelahnya jika ada sisa, harus dibuang.
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