Support #myEDSchallenge and help us make a difference !

I have joined the May Awareness Month Challenge to spread awareness and raise funds to support The Ehlers-Danlos Society by participating in the Make Ehlers Danlos Syndrome Known event. Please support me by donating to my fundraising page. Together, even a small amount can make a huge difference!

As a child I had frequent debilitating migraines. I passed out the last day of 6th grade while writing on the chalkboard. By 7th grade I was struggling with pain, frequent daily bouts of dizziness, and exhaustion. My whole body was in pain just from sitting up, and sleep was a battle between my pain and irregular heartbeat. By the summer after 11th grade I was unable to function and had to drop out of school.

It took 37 more years before I was properly diagnosed with Ehlers-Danlos syndrome. That was after having 6 joint surgeries, 2 spinal surgeries, nasal surgery, oral surgeries, multiple prolapses, and 3 ischemic strokes (one of which took half of my vision in one eye). And a thoracotomy to remove a cyst between my spine and my bronchial tubes.

Myself and both of my children have also been diagnosed with Ehlers Danlos Syndrome and comorbidities. it is a daily struggle for us all!

Ehlers-Danlos syndrome is often not recognized due to its complexity, because it’s symptoms mimic those of other conditions.

We need Donations to help fund:

• research
• develop testing and treatment

We also need to campaign for:

• Healthcare coverage for patients with Ehlers-Danlos syndromes and it’s comorbidities

The Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders that produce a spectrum of complex problems across multiple systems of the body. Symptoms that are often seen across all types are hypermobile joints, (that can move farther than normal), stretchy skin, & fragile tissues. Each case is unique and severity may range dramatically, even within families.

The Ehlers-Danlos Society is a global community dedicated to saving & improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, & related conditions. Our goal is world-wide awareness and better quality of life for all who suffer from these conditions, regardless of geography.

Please support me as I overcome my challenges with EDS to participate in the Make Ehlers Danlos Syndrome Known by donating. Thank you!