So glad to find you. I'm 51, a half-Sicilian woman in LA, CA, with my 13 yo daughter (both with ßTM—I give her everything <3), and our dog Lili, aka Lillers. We enjoy a mostly healthy lifestyle. We apparently come from a long line of Thals. My uncle had ßTMajor and lived til 63! He was a strong believer in diet and good living, designing his own regimens to his doctors' amazement. My mom was a silent carrier; I was dx'd in my mid-teens during the early 70s when little info was available (I was mis-dx'd with Leukemia first!).
Like many here, I was told by dismissive doctors ßTM is asymptomatic; and ignored clear signals this
what's the nice word for BS is untrue. Reading some posts here is like reading about myself, bringing me to tears.
My main focus is on women over 50 with symptoms,* and teen girls for prevention and education. I don't want my daughter to suffer what I and others have. Women are more "watery" shall we say, and there are more issues relating to fluids and cell regeneration.
* heart, gyno/perimenopausal, respiratory, exercise tolerance, or any others, as they potentially relate to ßTM. There are so many changes that happen after age 50 anyway, that I want to stay ahead of problems as much as is in my power with ßTM in the mix. Please, illuminate me, esp the ones with these specific conditions:
• Edema (cyclic)
• Asthma/COPD
• Cardiomyopathy
• Pulmonary Hypertension
Thank you, and am grateful for finding this forum—I look forward to sharing anecdotal info and theories!
Most of all, I thank Lisa Cammilleri (RIP) and her loving supporters for the labor of love that is this indispensable site. cheers
