Woman with Hypermobile EDS Seeks Treatment in Germany

When Isabel Blevins was just 16 years old, she caught the flu. While she recovered well at the time, her health seemingly went downhill after this incident. Suddenly, Isabel was experiencing fatigue and gastrointestinal issues; her small intestine was not working correctly. A surgery to remove her gallbladder didn’t seem to fix the issue. But tests came back normal again and again. Then, shares TimesNews, Isabel was diagnosed with hypermobile Ehlers-Danlos syndrome (EDS) when she was 18 years old.

Now, at 21 years old, Isabel is planning to travel to Germany to receive a unique surgical treatment for her hEDS. This operation, which is not offered in the U.S., is designed to address some of the damage caused by EDS. Ultimately, Isabel will undergo surgery on July 7th, 2022. The Patient Worthy team wishes her well!

Isabel’s Story

Before Isabel was diagnosed with hypermboile EDS, she was a fairly active high school student. She enjoyed participating in gymnastics, hanging out with her friends, going horseback riding, and cooking. But her life was changed when she first began experiencing symptoms related to her condition. Suddenly, Isabel was struggling to drink water and had difficulty eating. She was easily fatigued.

Her hEDS diagnosis came when Isabel was 18. Now, at 21, she still lives with the impact of EDS daily. Isabel has two feeding tubes, which she uses for eating and medication. She misses hanging out with her friends and riding her horse. Right now, she spends a lot of time with her prayer wall at home.

In the next few months, Isabel will fly to Germany to have digestive surgery. So far, the Blevins family has raised $30k for treatment, although the entire cost will be around $80k.

About Ehlers-Danlos Syndrome (EDS)

Ehlers-Danlos syndrome (EDS) comprises of a group of thirteen rare inherited disorders which affect the body’s connective tissues (skin, joints, and blood vessels). EDS results from inherited defects in collagen and related proteins. Mutations in genes such as COL5A1COL5A2TNXB, and PLOD1 may cause EDS. While symptoms differ based on subtype, there are some common symptoms which can be seen across the different subtypes. These include, but are not limited to:

  • Soft, velvety, fragile, and highly elastic skin
  • Easy bruising
  • Overly flexible joints that are prone to dislocation and sprains
  • Poor wound healing and abnormal scarring
  • Torn muscles and tendons
  • Chronic pain
  • Finger, neck, and spine deformities
  • Pregnancy-related complications
  • Stroke
  • Sudden vessel rupture
  • Internal bleeding
  • Heart valve disease
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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