What is Connective Tissue Disease?
I suffer from Chronic Pain issues, thanks to severe Fibromyalgia, as well as various skin disorders such as allergy to sun exposure (causes blistering & itchy spots that scar after, body-wide). A while back I had some skin biopsies done by a dermatologist, and the report that came back said I had Connective Tissue Disease. What on earth is THAT?! I was told that more testing/biopsies may be needed, but before I continue on with being a guinea pig, being spliced and diced, I'd like to know more about the whole Tissue disease thing! I was also tested for Lupus, which came back as negative, so that's not what is causing all this fuss (thank God!).
Help?
Thanks so much!
President Lincoln had a connective tissue disease (Marfan, as I recall), so you are in good company. The connective tissues are the "glue" that holds the body together--the elastic tissue. The strength and elasticity of that tissue varies widely. For example, some people are put together with tight "rubber bands" so they cannot do the splits. Other people are put together with loose "rubber bands" and some may call them "double jointed". The skin, ligaments, bones, internal organs, pretty much everything is connected by the elastic fibers--connective tissue.
The question is where do you fit on the connective tissue spectrum... tight? loose? And what label or diagnosis do you have? Doctors can go through great lengths to "label" someone (hence the ginea pig feeling). But, are these labels valuable to you? The treatment for most "diseases" (or normal variants) of the connective tissue is symptom specific not pathology specific. So, the label does not affect the treatment.
On the other hand, because most connective tissue disorders are inheritable, you may want to know the exact cause (like Ehlers-Danlos or Marfan or another) and seek genetic couseling prior to having children. Each type has a different inheritance pattern.
Continuing down the road of endless test, requires that you and your doctor understand how the diagnosis/label will affect the outcome for you and your offspring.
Dr. Christina Lasich, MD
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There are a wide variety of connective tissue diseases. Mixed connective tissue disease is an autoimmune disorder that occurs then the immune system attacks the bodies tissues, in this case the connective tissues of the body. Lupus is actually a type of connective tissue disorder - which is presumably why you were tested for it.
The course of the disease is apparently quite variable; at one point you can test positive for it only to have it fade away or it could get worse. The treatment appears to be similar to the standard therapies for other autoimmune diseases and may include corticosteroids if you have flareups.
There are also other possibilities; you'll have to wait for the outcome of your tests to determine whats going on. Good luck!
http://www.nlm.nih.gov/medlineplus/connectivetissuedisorders.html#cat1
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