What is a rare disease? In America, it means that there are fewer than 200,000 people with the disease or disorder at any given time. There are over 6,000 rare diseases. 80% of these have genetic origins. I have 2 rare diseases.
I suffer from Ehlers Danlos Syndrome and Mast Cell Activation Syndrome. Rare diseases, like mine, have no cure. There is also not as much known about these diseases. Doctors don’t study them, or only hear of them once in a while. Doctors don’t suspect these diseases when examining patients and they are rarely diagnosed.
When diseases aren’t diagnosed, the patients aren’t able to get the correct treatments (if available). The patient, incorrectly diagnosed, may even be prescribed treatments that make their disease worse. Either way, the patient suffers.
RareDisease.org says that progress is being made with clinical and scientific research, as well as the “development of new diagnostic and therapeutic procedures.” It’s important to share and research across international borders, because of limited resources. The US and the EU have monies available to study rare diseases.
For an individual or families dealing with rare disease, support is so important. Many times, they don’t know anyone else that has the same disease as them or their child. Rare Connect is a great place to learn and connect with others who are suffering with the same problem. The more we all learn, the better for ourselves and our families.
If you suffer from a rare disease, I would love to hear from you. It’s important that we all support each other.
Disclaimer: I’m not a medical expert. All posts are only my opinion. If you have a medical need or question, please consult your personal physician.
@2017, copyright Lisa Ehrman