Tag Archive: parenting

Finding the strength to keep going even as my body gets weaker

Often I find it a struggle to open a gallon of milk, I need help opening jars, and yes, I have become a person who has even taken a knife

View page

---

My 30 year journey to a pEDS diagnosis

I have periodontal Ehlers-Danlos syndrome (pEDS). It took 30 years to get that diagnosis. I had good dental care growing up, but had early-onset periodontal disease with bleeding and receding

View page

---

Our discovery of vEDS

Myself and my husband have our beautiful daughter, Effie. At one month old Effie started to vomit and sleep all day: we took her to the GP and hospital 17

View page

---

Baya is Zebra Strong!

This zebra’s name is Baya. She is passionate, strong and confident and and does amazing things. She is a swimmer, although you can imagine with hypermobile EDS the worry is

View page

---

I’m thankful for my early diagnosis

My name is Reavie and I am 16 months old. My mom and dad had never heard of EDS before they had me, although it turns out my mom has

View page

---

Managing my insecurities

My name is Rachel and I have classical EDS (cEDS). I’ve never been open to anyone about my insecurities about having EDS. I’ve told others that I have it, and

View page

---

The other side of vEDS: Frank’s story

I have dedicated my life to EDS awareness, educating doctors and medical personnel at every turn about EDS and vEDS. We must stop that phone call in the middle of the night.

View page

---