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Eoinok

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About Eoinok

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  1. I know that hair loss is a symptom of scleroderma, and people with linear scleroderma in the forehead (like me) often report hair loss where the scar meets the hair line. I don't mind hair loss so much because I've been shaving my head for years anyway, but what's really annoying is that these days my eyelashes seem to be much, much more likely to fall out. Almost every time I look in the mirror I see one on my cheek bone or just hanging among the other lashes, uprooted from its follicle. They get in my eyes, too. And even those that haven't already fallen out seem to be ranged very haphazardly, like the follicles have warped and are pointing in random directions. And I'm worried that one day they'll all fall out and I'll look even more freakish than I do now. I know many people on this forum have much worse problems than this and it's not something to make too big a deal of, but any help or advice would be appreciated. Has anyone experienced this? Does it just keep getting worse or does it stop at some point? PS. I'm getting UVA1 light therapy but I have to wear eye protection so it doesn't treat the eyelids. Thanks.
  2. Hi Quiltfairy. I like your poem. That's not at all how I feel about pain. It's definitely an enemy for me and not a friend. But your take is interesting.
  3. Update. I've been in contact with a Daavlin representative and they do indeed ship units to South Korea. However the cheapest would cost more than $3000 with delivery, commission etc. so at this time I can't justify buying one. But I've been able to work it out with my boss so I can visit a UVA1 equipped clinic twice a week, instead of just once. From what I've read online, twice a week is reasonable.
  4. Thanks. I have been to the Daavlin site and used their contact option to ask about delivery to South Korea. I was thinking it wasn't very likely they'd deliver here, but since you mention they list South Korean distributions there might be hope after all. I hadn't noticed that on the site. Thanks again. If anyone else knows anything, please let me know!
  5. I have found a doctor who offers UVA1 light therapy but my work schedule and the travel distance involved mean I can only receive treatment once a week. From what I've read online, three times a week is the norm. I know that in the USA you can purchase a small unit for the home, provided you have a prescription. Has anyone heard about this in other parts of the world? I live in South Korea but information about Europe would also be useful. Thanks.
  6. Thanks for your message, Amanda. I have not been able to consult with a scleroderma expert because I can't find one in my country of residence. I'm Irish but I live in South Korea. I've been in contact with the Irish Scleroderma and Reynaud's Association but they have not been able to find an expert here. I've arranged to fly home during my next vacation period but until then I think my best bet might be to go back to the dermatologists/rheumatologists at the nearest large hospital armed with as much information as possible and see if I can't get some kind of advice or treatment that way. It's extremely frustrating because I've actually gone through quite a rigmarole already with several different doctors/hospitals. I'd really like to know what I should be asking for in terms of drugs/treatment, but I'm afraid I'll just be told again that there is no treatment.
  7. Steve, I have a question for you if you don't mind. Has the indention steadily worsened over time? You mentioned it started at age thirteen. Did it get to a certain level and stabilize, or has it gotten worse continuously? Sorry if this is a rude question, it's just that I seem to be in the beginning stages of en coup de sabre myself and while I know your experience won't predict mine, I want to get details from as many sufferers as possible.
  8. Thank you for the kind and helpful replies. I've looked through the medical pages and my symptoms match en coup de sabre exactly. That's more information than my doctors gave me. As for my location: I'm Irish but I live in South Korea. I've contacted the Irish Scleroderma and Raynaud's association and they've been very helpful, but they haven't been able to find an expert in this country. I've seen dermatologists and rheumatologists, but no specific scleroderma specialists.
  9. Hi, I'll try to summarize my situation briefly. I went to a dermatologist because hard patches of skin had appeared on my forehead. I had a blood test and received a positive result for ANA. I took this as basically a death sentence. However, another doctor recommended another blood test, saying the earlier results showed only slightly elevated levels and could be a false positive. I also had an x-ray of my chest for lesions. Both the blood and the x-ray showed nothing to worry about. But at the same time the doctor said the skin issue almost certainly was scleroderma. That was a few months ago and the hard skin on my forehead has definitely gotten worse. not drastically worse, but worse. And despite following a very healthy diet, where I've cut everything other simple meat and vegetables, and a little fruit, I'm having gastrointestinal and bowel issues. Nothing really terrible, but the feeling of my stomach being not quite up to the task is fairly persistent. On the other hand, I feel quite strong and healthy most of time, as far as physical exercise is concerned. What I can't get my head around is the disparity between the seriousness of scleroderma as I read about it online, and the total absence of any treatment or advice from my doctors. They've basically said just wait and see if it gets worse. Can anyone recommend anything, anything at all, that I should be doing? And how worried should I be? Any help or advice will be appreciated. Eoin
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