Thank you for visiting my fundraising page! I am working to raise funds for the Ehlers Danlos National Foundation.

Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue disorder characterized by chronic joint and bone pain, hypermobility, stretchy delicate skin, fragile vessels and organs prone to rupture. People with EDS have unstable joints, fragile skin,  vascular and neurological problems because of a genetic defect in their connective tissue. The defect is caused by faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue. EDS affects 1 in 20,000 people.

There is no cure for Ehlers-Danlos Syndrome. However, through the Ehlers-Danlos National Foundation I have found support.  In the last two years, EDNF has spent over $140,000 for clinical research studies related to the early detection, diagnosis and treatment of patients with Ehlers-Danlos Syndrome.  EDNF provides patients like me with research, support groups, online message boards, educational programs, and medical resources. Please help me support the organization that has given so much to me and so many others who suffer with Ehlers-Danlos Synrome.

(My Personal Story)

Since I was young I knew I was different. I was always in pain, always tired, always dislocating my knees and hips. When I got hurt it took forever to heal. I remember being a little girl and knowing I had to sleep, not because my eyes were becoming heavy but because my bone pain was becoming unbearable. Pain, I have never known life without it. My mother took me to every doctor. “Growing pains”, they said. “Hypochondriac”, they said. “Lazy, a complainer, klutzy”. I heard it all. “I don’t know why she needs surgery but she does. Her patella will not stay in place so she is unable to walk.” Surgery, trips to the ER, dislocations, subluxations, pain. Finally, after my mother’s relentless search for answers, she came across a young doctor fresh out of medical school who said, “Oh my god, I think your daughter has a rare connective tissue disorder called Ehlers-Danlos Syndrome.” A couple of years and tons of doctors later I was accepted into The Sylvester Cancer Center & Rare Disorders in Miami, Florida where my diagnoses was confirmed.

So what does this mean? Just like you my body is made up of collagen. Unfortunately, mine is defective. As a result, my joints (every one from my collar bone to my toes) are loose, flexible, and unstable. They dislocate throughout the day every day. My skin is fragile, cuts easily and heals poorly. Unfortunately, my heart has also been affected. Due to instability of internal organs, I have my heart, eyes, brain, and other internal organs scanned often to check for any possible dissections. Echocardiograms, CT scans, and MRI’s are a normal part of my life. During my latest MRI, I was diagnosed with Chiari Malformation, which occurred directly as a result of EDS. Chiari Malformation or brain settling is a fancy term to describe the fact that my ligaments can no longer hold my brain in proper position. As a result, my cerebellum has begun to settle into my spinal cord. Surgery is the only way to fix this problem but unfortunately surgery is high risk for EDS patients. Luckily, I have found a neurosurgeon, Dr. Fraser Henderson, one of the few in the country who has agreed to do the surgery necessary to treat my Chiari. It will be a long journey but one I know I can get through, especially with the support of my family and friends.

My constant trips to the hospital and doctor’s offices have taken their toll on me and those who love and care for me. This is just one other reason that the future of the Ehlers-Danlos National Foundation is so critical.

I have learned many lessons through my journey but the most important one is this: My family and friends are so important to me and what matters most. I am grateful for each day and continue to feel happy and blessed for all that I have.

To learn more about Ehlers-Danlos Syndrome please visit EDNF.ORG

No donation is too small. From the bottom of my heart I thank you. May good health and happiness surround us all. To all those who have lost their battle to Ehlers Danlos Syndrome, you will always be remembered.