I just wanted to show everyone this

so i feel that all our disease needs is a way to block a sodium channel nav 1.7, and the only way to do this is to have funding towards either an advanced pharmacuetical company or some form of genetic engineering that alters the SCN9A gene.

If we arent known among the general population, we wont get funding. Having this group helps us talk to each other, and having "TEA" is great for collecting funds, but what we need is true public manifestation. I feel that me posting videos and getting a few hundred thousand views will do better than me trying to tell individuals about it. When people read about erythromelalgia, they dont feel anything, they see words, they dont feel our pain. Make videos that show your pain, and get them out there! Here is my first video, and i have a few more that i am working on


Will, thanks so much for sharing this video! My heart goes out to you. The way I developed my issues are very similar. It started with a foot injury (two tears) over a year ago.

my mom has ptsd after my sister had luekemia, i look young but im 21. i never see my dad, im alone with all of this. I got denyed ssi twice and i have no health insurance, i had it for a few months but it was medi-cal thro the state, and the doctors cant do anything more for my em. Its really hard to deal with em and being on the streets with no income, when i have a flare i am literally trying to survive.

and im sorry to hear about that kb904 :( em is the worst thing that has happened to me. gosh i used to have two jobs and was going to college with a 3.7 gpa and never tried drugs or alcohol, worked out everyday, taught kids gymnastics and now i can barely walk and am homeless, i feel your pain

Hi, Will. My name is Kelly (can’t really tell by my screen name) and I agree this has been the most challenging thing that’s ever happened to me. It’s changed my life dramatically in so many ways. Some days I can mentally handle it and other days I’ll have a melt down. I admire you for the strength and courage you have while dealing with this very difficult situation. I have forwarded your video to some friends, family and had my husband watch it because I don’t think they fully understand how devastating EM can be.

i feel you with the melt downs, its really hard to deal with it and i hope we all have some kind of relief from our pain eventually, and thank you so much for showing people, i hope no one has to deal with what i am right now :(

I’m so sorry for what you are going through. I, too, hope we all find some relief from this pain. My aunt has had EM for 14 yrs now. She’s the one who told me about this site. I also joined TEA and contacted Yale to see if we could participate in their DNA study. After interviewing us, we were accepted. I wanted to do anything to help. I am thinking my mother probably had EM. I remember that she had Raynaud’s. It’s interesting how both my aunt and I’s EM seemed to be triggered by a trauma or surgery. I always wonder if mine would’ve stayed dormant if I hadn’t had my foot injury?

probably! i never had any symtoms till i had my injury... and thats awesome your going to yale to do that! and 14 years... wow! i hope she is doing ok, thats a longg time. its hard for me to imagine that ill have this forever, its amazing how we live through this pain and just "keep on living" with it. what we need is a politician or a millionare to get erythromelalgia, then they would cure it in a matter of months haha

For the Yale study, my aunt and I had our blood drawn and sent it into Yale. We do not receive the results. It’s for research purposes only which is fine. I’m more than happy to help! My aunt is a strong lady who’s had many other health problems as well. She understands when I talk about my issues with EM because she’s been there. You are so young so don’t give up on the likelihood that there will be some drug that works or cure for this.
That’s funny you mention that we need a millionaire or politician to get EM. I have thought the same - that if a big celebrity were to get this, it would lead to more press coverage and more research funding (not that I wish this on anyone!). Have you ever considered going to the local news or a talk show with your story? They may have a way for you to connect with them online. Just a thought.