NH EDS Coalition is transitioning to
New Hampshire Rare DISorders
We understand that the EDS community that has been supporting us these last two years may have concerns and we hope to answer some of your questions here.
We believe that providing rare disease educational opportunities will benefit all rare diseases in general and individually, including EDS. Our commitment to you is to make rare disease continuing education programs such as conferences and webinars easily accessible for NH healthcare providers of all disciplines.
Funds raised up until the transition takes place will be reserved for EDS and EDS related activities (ex. chronic pain, physical therapy, mental health, dysautonomia, gastroparesis, Hoofbeats 5K, etc.). Thereafter, funds raised may be used for other rare diseases. Hoofbeats 5K will continue to be an annual fundraiser and awareness event for rare diseases.
After the transition a donor may wish to have their gift used for a specific rare disease. We will work with the donor to create a plan for this. The donation amount will dictate the extent of what may be accomplished. Examples include having an information booth, an expert speaker, or patient speaker at the next event. Keep in mind general donations will still be just as important for issues common to many, or all, rare diseases; extended time to diagnosis, misdiagnosis, chronic pain, functional impairments, lack of treatment, insurance issues, lack of provider interest, etc.
Feel free to contact us with any questions you may have!
Committed to Awareness, Education and Support
for Ehlers-danlos syndromes and other Rare Diseases
NH EDS Coalition is a nonprofit organization established and operated by volunteers with a personal connection to Ehlers-Danlos syndromes (EDS). The goal is to change the culture surrounding EDS so that affected individuals will gain earlier recognition and better care in New Hampshire.
Ehlers-Danlos syndromes (EDS) are a group of genetic collagen disorders, each with different presentations. Collagen provides support and structure to the body. In EDS the collagen is deficient and easily damaged. Loose tendons and ligaments allow the joints to move past the normal range of motion and cause joint instability leading to widespread musculoskeletal pain. Many people may have similar presentations yet fail to meet the new strict diagnostic criteria for EDS. These individuals may be given the diagnosis of hypermobility spectrum disorder (HSD). EDS and HSD likely have similar underlying etiologies and may benefit from the same treatment approaches. Since collagen is found in all major body systems people can have a broad range of symptoms such as digestive problems, fatigue, headaches, dizziness and fainting. Due to the systemic nature and symptoms that seem unrelated, it can take years, decades, and generations from the time of symptom onset to diagnosis.
Why the Zebra?
Medical students are taught to think horses (common illnesses), not zebras (rare illnesses), when they hear hoofbeats (symptoms). The result is that folks with rare diseases are frequently undiagnosed or misdiagnosed because physicians are looking for the most common cause of symptoms. This leads to further pain and disability during the years it takes for an accurate diagnosis. The peculiar thing is that EDS are likely not rare, but rarely diagnosed.
NH EDS Support Group was created in October 2015 to connect people whom are diagnosed with EDS/HSD in New Hampshire, and surrounding states (VT, ME, MA), to each other. It is a forum to discuss the symptoms and peculiarities of EDS/HSD and to offer support to those living with it, their families and loved ones.