Wife, mama, & EDSer sharing what God is doing in my life even with chronic pain. Had surgery in Germany on multiple compressions #mals#smas#ncs#mts#pcs
Yes! Pain is a presenting symptom in 90% or more of cases!
Do people (patients and clinicians alike) agree that pain is often the biggest contributor to diminished quality of life in #EhlersDanlosSyndromes and #HSD? 🤔🦓
@HMSACharity@EDSawareness1
Wearing purple for SMAS Awareness Day and driving 3 hours to my cardiologist appointment. In memory of all lost SMAS warriors and those still fighting for belief, diagnosis, and treament 🎗️💜 #smas#smasawareness https://t.co/ly2q3w6OJ4
Surveys & Research Studies 👇https://t.co/jB2sHD72lt
Do you know any other surveys or studies currently seeking participants or websites that you'd reccomend to find them?
On Jan 28 wear purple 2 raise awareness 4 #SMASyndrome The NPO has cards available to give out to anyone who wants them. Cards have names of SMAS Warriors who have passed away. #PayItForward & give a card! Message us to get your cards #NotTooRareToCare#OneInThreeWillDie
Chronic Illness Style: Comfort 👇
https://t.co/LEdwtyvu5Z
Have you tried Zyia? Are there other brands that are your go-to for comfort or seem to be made for chronic illness wear?
Further EDS & Comorbidities Education 👇
https://t.co/JiMPD2vrvS
Any videos, journals, or articles that have furthered your knowledge or health journey? Please share below 🙂