Support Natalie's #myEDSchallenge and help us raise awareness

Our family has joined the May Awareness Month Challenge to spread awareness and raise funds to support The Ehlers-Danlos Society. Please support us by donating to our fundraising page. Together, even a small amount can make a huge difference!

For the 3rd year, Natalie is organizing EDS Awareness at Massapequa High School. Her goal is to raise awareness with the administration, teachers, students, and the community at large. In support of her project, we have also set up this fundraising page.

As many of you know, Natalie and her sister Nicole are both affected by EDS. The past year has been very difficult for Natalie. She is no longer able to attend school, and is restricted to her bed or wheelchair most the day. Natalie is no longer able to lead the active teenage life that she sees her peers living.

Natalie had four different surgeries this past year, including tethered cord release surgery and three lumbo-atrial shunt surgeries. She had surgery in Providence, RI and Hershey, PA, and we routinely travel to specialists as far as Maryland and Boston to treat EDS and related conditions. Natalie's last surgery removed her shunt, so she currently has no active treatment to help improve her symptoms.

We are wearing zebra ribbons in recognition of EDS awareness month, as a visual reminder of this invisible, chronic illness. Every person that asks "Why are you wearing that ribbon?" or "Why Zebra?" is an opportunity to increase awareness in the community. Maybe on of those conversations will eventually lead to just one person finding their diagnosis just a little more quickly, and know that they are not crazy, and it is not "all in their heads".

We hope that increased awareness in the medical community will lead to new treatment options and improved diagnostic tools. All too often, EDS and related disorders like cranial-cervical instability (CCI), inter-cranial hypertension (IIH) and POTS are not well understood, and there are too few options available for patients. We have been blessed to find amazing doctors and build a strong medial team for Natalie, but in so many cases, there are just no answers for how to help patients like Natalie.

We don't know what the future holds for Natalie. We hope she will be able to follow her passions and go off to college to study engineering, followed by law school. We hope that she will be able to return to high school next year to have a proper senior year experience. We don't know how we will get there, but we remain hopeful, for her sake.

Our family and friends have been so supportive. Thank you all for your good wishes, your well-timed phone calls and text messages, and for just being there for our family.

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 us as our family overcomes our challenges with EDS to participate in the Massapequa High School EDS Awareness by donating. Thank you!