I’ve been writing about EDS Awareness Month for quite a few years. Even though my great readers have heard about this, most people haven’t. Many doctors are also unaware or are poorly educated about it. Because diagnosing it and treating it are such a problem, it’s important to keep awareness movements active.
Ehlers Danlos Syndrome is a genetic condition that has many different types. Recently, the list of types has been updated to include more rare types. Here are the types:
- Brittle Cornea Syndrome
These syndromes are a group of connective tissue disorders and can affect the body in different ways. These can be inherited. Some of the characteristics are hypermobile joints, skin that stretches more than normal, and frail tissue.
Testing for diagnosis includes genetic tests for all types except the hypermobile type. I have the hypermobile type, which is very common. I’ve had this since birth, but was only diagnosed at age 51. From the time I first complained of symptoms to my doctor to the time of diagnosis was 13 years.
Diagnosis of EDS takes too long and many patients are dismissed or misdiagnosed before the true diagnosis is discovered. Many years of suffering and unneeded improper treatment is the norm for EDS patients. Many of these improper treatments can cause further pain and suffering. This was certainly true in my case.
Like most diseases, there can be various levels of severity in EDS. The Vascular type of EDS can cause death at a fairly young age. This is because this type causes rupture of organs or arteries, even at a young age.
Diagnosis must be done by a Geneticist, who are often hard to see, because of lack of referrals. If you feel like you might have a form of EDS, keep requesting a referral to be seen by a geneticist. It took me a long time, but I didn’t give up.
To find out more about EDS, please check the Ehlers Danlos Society Their website has everything there to help you with education, awareness, and more!
Disclaimer: I’m not a medical expert. If you have medical concerns, please consult your personal physician.
@2018, copyright Lisa Ehrman