Post #3589874

I went to the non-24 session, which is hosted by Vanda Pharmaceuticals. They had a lot of good information about how non-24 works and its symptoms and they answered people's questions about it. However, there were some odd things about the session. First, they didn't talk about treatment at all, and were forbidden from talking about that. They said it was a legal requirement that they can only talk to groups about the condition itself and not treatment, and it seems that they don't advise individuals one on one on treatment either, although the company develops Tasimelteon, one of the treatments for non-24. Also, they were telling people not to self-diagnose and to talk to your doctor about it and about treatment. But I think exactly the opposite advice should be given; when I told my doctor about my issues with sleep and tiredness during the day and how it seemed to be on a cycle where my sleep and wake times shifted forward over time until it was back to normal and then repeated, and described all of this in detail, he didn't seem to think any of it was a big deal and suggested techniques for better sleep hygene like going to bed at the same time every day and stuff like that. Even after last year's convention, when I talked to him again about it saying I thought I had non-24 and told him about Tasimelteon, he still didn't seem to take it very seriously. He perscribed it to me because I asked him too not because he thought it was necessary, but didn't try to diagnose me or suggest other treatments or anything like that. And my grandparents said he is a good doctor. So if that's how a good doctor reacts to non-24 and its symptoms, I think most doctors would not know about it and would be likely to be dismissive of reported symptoms. So I think doing your own research and self-diagnosis is a good thing and what you should do. The speaker said that out of people with no light perception, 70% have non-24, so to me that means that if you have no or little light perception and have trouble falling asleep at night or staying awake during the day, or if you feel very tired a lot during the day, and especially if it seems to be on a cycle where your day-night rhythm shifts over time, then you probably have it. In addition, last year at the convention, WhyAmIUp, another company specializing in non-24, was here, although they are not here this year. I think I missed their session but I went to their exhibit, and they gave me a link to a survey. On the survey it asked me questions about sleep patterns and tiredness during the day and light perception and similar things. Then after the survey was completed, a few days later I got a call from a special services pharmacy about Tasimelteon. A telehealth doctor had perscribed that to me based on the survey, and my insurance (Medicare and Medicaid) covered it without sleep tests or anything like that. Honestly I think this is a good thing; if my doctor wasn't as accomodating, I could have still gotten the medication I needed, and it makes sense for a company specializing in a rare condition and expert in it to recommend and make available treatment for it. Since I started taking Tasimelteon, my sleep has been so much more consistent and my tiredness during the day has been so much better. I don't blame the speaker at all because I think she did her best with the requirements that were given to her and she did give a lot of good and useful information, and she explained the condition and the symptoms very well. It also seems like she truly cares about this a lot. And I would recommend people who think they might have non-24 or blind people who have trouble sleeping or tiredness during the day to go to the Vanda booth in the exhibit hall to learn more about the condition, or if you're not at the convention to go to their website and contact them. Also talk to your doctor about your symptoms too in case it is another sleep condition and not non-24. But if your doctor is dismissive or doesn't know about non-24 and doesn't research it for themselves, do your own research and self-diagnosis and push for what you need. And I would recommend taking the survey at WhyAmIUp's website and getting treatment if that's what you need to do. We seriously need to take this into our own hands and do whatever is necessary to deal with this condition, because non-24 is seriously debilitating. Its a large part of why I failed in college the first two years and something I struggled against all through junior high and high school and even earlier, being so tired during the day and not knowing why, and parents and teachers not knowing why either and often dismissive of what I was going through. #NFB26