I recently signed up to be a #RareDisease advocate (since I’m apparently collecting rare diseases like I used to collect baseball cards), and today, I’d like to ask my friends, family, and followers to help me out.  All I ask is that you to like these pictures, maybe also share them with your own friends/followers. That’s it!  Next week, I’ll be joining other RARE legislative advocates in meetings with our local members of Congress (Congressman Langevin, Senator Whitehouse, and Senator Reed) to discuss important issues for the #RareDiseaseCommunity  As some of you know, a few years ago, I was diagnosed with idiopathic hypersomnia (IH), which means I’m essentially narcoleptic without falling into REM sleep (probably because I also have #REMBehaviorDisorder ). That means I sleep around 10-11 hours a day on average (some days, 20-22 hours — a real problem for a #type1diabetic ). The sleep is almost always accompanied by night terrors, intense night sweats, and very little restful REM.  In addition to making it impossible for me to work anywhere, it also makes it near-impossible for me to make plans and count on keeping them.  I’m on a stimulant to try and keep me awake during the day, but it’s not powerful enough. When my doctor tried to add an additional stimulant to the regimen, my insurance refused to pay for it, claiming there has yet to be enough studies done to prove the effectiveness of that drug on IH patients.  Rare Disease Legislative Advocates (RDLA) is an important organization that tries to draw attention to these types of issues, and I’m proud to have joined as a first time advocate this year. I hope you’ll like and share this post so that others can learn more about this essential work. As you can imagine, it’s hard to get funding and congressional support for issues that are mostly unknown by the general public. Please help me get the word out, and please consider supporting #RDLA and the #HypersomniaFoundation. Thank you!  #RAREacrossAmerica2021 #RAREacrossAmerica #RareDisease #advocacy #hypersomnia #idiopathichypersomnia #BeyondSleepy #AlwaysExhausted @repjimlangevin @senwhitehouse (at Warwick, Rhode Island) https://www.instagram.com/p/CLmNUxBns4O/?igshid=1duercgqfyzce
