May 19, 2010

Behcet's Disease Awarness Day May 20, 2010

Behcet's Disease is Named after a Turkish dermatologist who discovered it in the 1930s, it is an autoimmune disorder that results from damage to blood vessels throughout the body. The immune system is suppose to protect the body from disease and infections by killing harmful “foreign” substances such as germs that enter the body.

In an autoimmune reaction, the immune system attacks and harms the body’s own tissues, according to an explanation on the Web site of the American Behcet’s Disease Association, reaction then triggers inflammation of the blood vessels, which leads to swelling, redness, heat and pain and a lot of time ulcerations (or at least that has been my experience).

Behcet’s has the ability to involve blood vessels of nearly all sizes and types, ranging from small to large arteries, and affects many sites throughout the body any where you have blood vessels you can have Behcet's disease. Behcet's seems to mainly to manifest itself in the eyes, mouth, skin, lungs, joints, brain, genitals and gastrointestinal tract.

The four common symptoms of Behcet’s are mouth sores, genital sores, skin problems and inflammation inside the eye. Involvement of the eye happens in more than half of those with Behcet’s disease and can cause blurred vision, pain and redness. Other symptoms include arthritis, blood clots, and inflammation of the central nervous system and inflammation of the digestive organs.

Behcet's is very rare in the US effecting abut 1 out of a half million people and is more common among those from the "silk road region."  It is so rare that two times I was in the ER I had to explain to the ER doctors what it is. Most doctors heard of this disease but have never seen your know much about it.

I was recently diagnosed with this disease after being misdiagnosed for years with Crohn's Disease. It was easier to get people to listen to my symptoms when they thought I had Crohn's.  I have dwelt with many of the symptoms since my teenage years.

 To combat this disease I am taking Methotrexate (a chemo drug) Imuran (an immune suppressant drug) Propanolol for migraine control along with several others to combat this disease. There is no cure for this disease and treatments are limited to treating the symptoms the patient is having. 
For me Behcet's gives me skin, mouth,  joint, stomach and intestinal & genital ulcers.  So far my eyes and lungs have not been effected by the disease. 

 This disease can be embarrassing and most of the time very painful. As with a lot of other diseases, I can never forget I have this illness. I have to budget my activities and plan things carefully.  I run out of energy quickly and the side effects of the medications make things interesting to say the least.

   I am always very careful about what crowed environments I attend and during Cold and Flu season and I very rarely attend public functions and limited church service attendance because I am afraid of getting sick with what ever illness goes around at any given time,
  I get sick easily which people don't understand.   

I don't deal well with a lot of pain, and tend to get really grumpy and agitated quickly.  I have a short fuse that gets shorter when I am hurting.  God is working on me in this area. I know this isn't going to go away. So I am finding new ways to deal with it. This isn't a fatal disease but it can cause blindness, and strokes.

If you want to learn more about Behcet's disease check out the American Behcet's Disease Association website or contact me.  

Thank you for your interest!
Prayerfully Your Sister In Christ

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