Wow, this is a really amazing story. I was really surprised at the type of treatment that the doctors chose for him. I've always understood that most acne treatments, like Accutane, dry the skin up, and I know that Accutane is usually for more severe cases of acne, so I would assume that it would be even more drying than other treatments, so it really jumped out at me that that was what the doctors chose for him when his skin was unable to retain moisture and they were afraid he would die of dehydration.
I wish that they would have talked to Ryan more in this clip about how it felt for him. I'm also really curious about his sight. When they showed him as a baby and his eyes turned inside out because his skin was so tight. I would think that this would definitely have a lasting effect on him, even after surgery, but they didn't touch on his eyes at all later in the clip. I looked on the web (http://www.bing.com/reference/semhtml/Harlequin_type_ichthyosis?src=mtoc&fwd=1&qpvt=harlequin+ichthyosis&q=harlequin+ichthyosis) to find a little more information on Harlequin ichtyosis and found that those with this medical condition are very susceptible to other eye damage. Also I found that these individuals have trouble touching and grabbing items, because their skin is so tight that they cannot bend their joints like we can, or if they do, it might cause them to crack even more.
Another person with this medical condtion, Nelly Shaheen, is the oldest living individual with this disease. She is 24. Her treatment consists of taking a bath and covering herself in a waxy substance to rub off her extra skin cells. Nelly is one of eight children, 4 of which also had Harlequin ichtyosis but who died as infants, but neither of her parents had the disease. I found this information from the article http://www.birminghampost.net/news/west-midlands-health-news/2008/05/09/nelly-is-a-real-diamond-girl-65233-20886612/
Wow. I remember watching a documentary on this disease a long time ago about a family that the kids had it. I've been looking for a link to the story but haven't found it yet. I agree with Anna I was also surprised in Ryan's treatment with acne medications. Most acne medications do dry out the skin.The documentary I saw showed the kids taking a bath in a medication and then having to wipe off their dead skin and it being really painful. I also wish that the video would have talked to Ryan more about living with the disease. This video just gave us an idea of what the disease was not how he is living with it. They mentioned that his hearing and eye sight weren't great. I wish they would have gone more in depth talking about that. Is it getting worse or better? What have they done to make him able to live normally. Will the condition worsen as he ages or stay the same? The video was very interesting but didn't give much personal information on Ryan's day to day life other than a feeding tube and acne medications. I'll continue to look for a link to the documentary I saw.
This story is truly amazing to see what the human body can do and also what anyone can do as long as they put their mind to it. I have never seen anything like this or the disease that Ryan has had to live with. It was neat that they used Accutane for his treatment and like Anna said up above it surprised me that this was their choice of medicine. It just goes to show that as long as you listen to what someone is saying you can go a long ways. Again going along with what Anna said I cant believe he was able to see especially seeing what his eyes looked like and what he had to go through to just try and live. It was amazing that he is still alive and shows how far medical advancements have came.
Wow, this is a really amazing story. I was really surprised at the type of treatment that the doctors chose for him. I've always understood that most acne treatments, like Accutane, dry the skin up, and I know that Accutane is usually for more severe cases of acne, so I would assume that it would be even more drying than other treatments, so it really jumped out at me that that was what the doctors chose for him when his skin was unable to retain moisture and they were afraid he would die of dehydration.
I wish that they would have talked to Ryan more in this clip about how it felt for him. I'm also really curious about his sight. When they showed him as a baby and his eyes turned inside out because his skin was so tight. I would think that this would definitely have a lasting effect on him, even after surgery, but they didn't touch on his eyes at all later in the clip. I looked on the web (http://www.bing.com/reference/semhtml/Harlequin_type_ichthyosis?src=mtoc&fwd=1&qpvt=harlequin+ichthyosis&q=harlequin+ichthyosis) to find a little more information on Harlequin ichtyosis and found that those with this medical condition are very susceptible to other eye damage. Also I found that these individuals have trouble touching and grabbing items, because their skin is so tight that they cannot bend their joints like we can, or if they do, it might cause them to crack even more.
Another person with this medical condtion, Nelly Shaheen, is the oldest living individual with this disease. She is 24. Her treatment consists of taking a bath and covering herself in a waxy substance to rub off her extra skin cells. Nelly is one of eight children, 4 of which also had Harlequin ichtyosis but who died as infants, but neither of her parents had the disease. I found this information from the article http://www.birminghampost.net/news/west-midlands-health-news/2008/05/09/nelly-is-a-real-diamond-girl-65233-20886612/
Wow. I remember watching a documentary on this disease a long time ago about a family that the kids had it. I've been looking for a link to the story but haven't found it yet. I agree with Anna I was also surprised in Ryan's treatment with acne medications. Most acne medications do dry out the skin.The documentary I saw showed the kids taking a bath in a medication and then having to wipe off their dead skin and it being really painful. I also wish that the video would have talked to Ryan more about living with the disease. This video just gave us an idea of what the disease was not how he is living with it. They mentioned that his hearing and eye sight weren't great. I wish they would have gone more in depth talking about that. Is it getting worse or better? What have they done to make him able to live normally. Will the condition worsen as he ages or stay the same? The video was very interesting but didn't give much personal information on Ryan's day to day life other than a feeding tube and acne medications. I'll continue to look for a link to the documentary I saw.
This story is truly amazing to see what the human body can do and also what anyone can do as long as they put their mind to it. I have never seen anything like this or the disease that Ryan has had to live with. It was neat that they used Accutane for his treatment and like Anna said up above it surprised me that this was their choice of medicine. It just goes to show that as long as you listen to what someone is saying you can go a long ways. Again going along with what Anna said I cant believe he was able to see especially seeing what his eyes looked like and what he had to go through to just try and live. It was amazing that he is still alive and shows how far medical advancements have came.