I was so thankful to be diagnosed with Classical EDS at 31yrs of age. Somebody had finally put a name to what I had been dealing with all of my life. My kids were showing signs of it, as well, and I was scared not knowing what we were dealing with. But prior to being diagnosed, a friend of mine suggested that I might have it and that I should look into it. My mom and I researched and agreed that I needed someone to diagnose me to verify that this truly was what I was dealing with. I had switched primary doctors after they suggested I was abused. Mom researched that a rheumatologist could diagnose a person with it. I asked my doctor to refer me to one and the specialist had no idea, either. He said I’d probably have to go to Mayo for something like that. My mom researched specifically rheumatologist+ EDS+our area and came up with a certain clinic. I asked my primary doctor again for a referral. That specialist said that it was intriguing, but that it wasn’t her area of expertise. She referred me to another…. By this time, I was at my due date with my third child. I was sent to a specialist that not only helped people with EDS, diagnosed people with EDS, but also HAD Ehlers-Danlos Syndrome! Now, that may seem like a miracle to you, and yes, I was praying and had wonderful support…. But it was the awareness from a friend that helped me to find the answers I needed, and the research we did to find someone who would listen.
I want to raise awareness of connective tissue disorders, so that there are answers out there to why you or your loved ones are suffering and that there are ways to help. Now, I’m not going to list all of them; There are over 200 recognized connective tissue disorders of multiple causation. I’m going to list a few that are related to EDS and their differences, and I’ll try to list more as I learn more.
Here are a couple of generalized differences…
EDS can have stretchy skin and be double jointed….
symptoms include changes in skin,
joints, blood vessels, and other tissues
such as ligaments and tendons.
Marfan can have long arms or fingers
problems commonly affect heart, eyes,
blood vessels, and skeletal malformations
Epidermolysis Bullosa (EB)
problems may include blisters on inside and outside of body,
tooth decay from an early age, and difficulty swallowing
problems include extremely fragile bones
Some Other Non-Hereditary Connective Tissue Disorders where the cause is unknown…
Rheumatoid Arthritis (RA)
Yes, it is also possible for one to have more than one connective tissue disorder; different mutated genes from both parents can result in more than one disorder in an individual or their children etc. Here is an informative video on a chip they are trying to implement to test for different disorders easier and more cost effectively.