I live in Massachusetts and am calling out to all other residents of Massachusetts that have been diagnosed with EM or they think they have
EM. If you are in the states, if you could post on any public forum you belong to advising if anyone in Mass to come on here and tell us? In the near future, I am striving for this post to be on FB TEA and on the TEA web page. I am trying to get this approved at state level to have an awareness day in the state. If that can happen, we can proceed to federal level and all states, etc. Let’s get this going ! Hopefully next week, I will have further instructions and contact information. Just want to get this out there !
This will help awareness so others don’t have to struggle like us. This will help patients have an idea of what they might have and be able to address it with their doctor.
My goal and I will make this my goal until my last breathe.
When a doctor hears…red hot feet hands…immediately EM will pop up in their heads.
You can certainly add me to the list - my Dr at MGH is hoping to start a clinic specifically for people with genetic neuropathies. I will be part of that clinic, and she is hoping to get more publicity and public awareness of the inherited/genetic neuropathies(including EM). You can PM me
For more info.
If anyone is from Massachusetts please let me know. This is very important to get awareness… Means possible funding for research. Not to mention that it will bring awareness to the entire state. Once that happens this can spread to other states, etc. More doctors aware means more help. More undiagnosed become diagnosed the numbers go up… This will eventually not be listed as a rare disease when more are diagnosed. Then we will get the help we need. If not in our lifetime, let’s make sure our kids and the next generations don’t have to suffer like we do. No more lives to be taken! No more burning pain!
Please post on your public forums regardless of where you live. Ask to share.
You can write your own message and put my email. Whichever you prefer. I can’t do this without your help. Let’s get this going and let’s see an awareness day, then radio, TV, research, funding, HELP!
Here’s what you can copy and paste for fast.
Please share this very important message: if anyone lives in Massachusetts and has symptoms of red, hot, burning feet or hands or if they have been diagnosed with erythromylalgia, please email Paula Corey @ ■■■■■■■■■■■■■■■■■■■■■■. She is trying to have A MUCH NEEDED awareness day for the state of Massachusetts. She needs people to come forward in order to accomplish this. Please help.
Thank you and please let me know by private message here or email.
Hey EM Crew!
I’m a western Mass resident. Would love to help out in state/regional awareness activity. My dream would be to have a EM-patient seminar in New England.
On line support is fundamental to coping with this disease. An in-person forum would be so valuable. Any one know of an EM conferences? If not …can we get one going?
Most sincerely,
Elis (Christine) of the Berkshires.
Hello there my friend from Mass ! I am sorry I have been missing, so much going on, currently moving to try to find a smaller home as I can’t tolerate this one any longer. Along with that my awareness fundraising campaign. If you could send me an email to ■■■■■■■■■■■■■■■■■■■■■ I can fill you in with the process and keep you up to date. There are many of us in Mass ! Can you believe it? In just a short time, I have heard from so many and all over the world. The awareness is working. But I need everyone’s help in order for it to keep on going. I look forward to speaking with you. Paula