As I’m trying to get things done as far as getting help with doing a fundraiser for CSS, and having to do some overtime on the job over the past few days and a whole lot of other things of a personal nature I have not really been able to do too much blogging as you may have noticed this week…but I did run across what is an older article that I just found on the Vasculitis Foundation Canada site.
This tale is about a woman named Cindy who was diagnosed with Behcet’s Disease back in 1996.
But before I go any further I’ll bet that those of you out there in my audience who are just basic people may be wondering just what Behcet’s Disease actually is anyway…
Behcet’s disease is a type of vasculitis characterized by mouth sores, genital sores, inflammation inside of the eye, skin problems, and arthritis (swelling of the joints).The disease usually affects more men than women. The disease appears to be more severe in young, male, and Middle Eastern or Far Eastern patients.
The most striking feature is the presence of painful ulcers (sores). Oral (mouth) ulceration that happens more than three times in one year is considered to be diagnostic for Behcet’s disease. Genital ulceration and skin lesions occur in 75% or more of patients. Brain (neurologic) disease occurs in less than one-fifth of patients. Inflammation inside the eye occurs in 25-75 % of patients. Both the small and large blood vessels (the vascular system) can be affected. People who have vascular involvement are at an increased risk of venous thrombosis (a blood clot in a vein). The vessels of the central nervous system (brain and spinal cord) or the heart may also be affected by Behcet’s disease.
The underlying cause of Behcet’s disease is unknown. There may be environmental or viral factors that make a person’s immune system act differently, due to a genetic predisposition. Investigators are researching these and other possible causes.
There are no specific laboratory tests in Behcet’s disease and therefore the diagnosis is made on the basis of the clinical findings.
Okay, so that’s just the basics of the disease and now here is just part of Cindy’s story….
“ My journey started 1 year after having my son. (After 5 years of trying) My first major flare was when I was watching T.V. and all of a sudden I got this execrating pain in behind my left eye. It felt like someone had taken an ice pick, jabbed it into the back of my eye and started to push it out from behind. There was a lot of pressure. Then my left eye started to close and droop, followed by left sided numbness of my face. Also I started loosing sensations on the right side of my body along with weakness. I was taken to the hospital and then rushed to another by ambulance. They thought I had an aneurysm. I was sent for an angiography right away. This test turned up negative and I was told that I probably had a rare form of migraines. ( I had suffered from migraines since I was a teen but this was not my ordinary migraine). I was then sent home after my tests came back negative. ”
” My lists of problems never seem to stop growing. I am now on permanent disability. I never know from one day to the next if I will be able to get out of bed or not. I’ve had to have wheelchairs, walkers and canes to help me get around. This disease is so painful. The fatigue and headaches alone can be so debilitating not to mention the ulcers. I have even traveled to the States to visit a doctor at the Mayo Clinic in search of some answers. ”
Just when I think ok I can handle this, something else seems to go wrong. It just never ends. It’s hard for other people to understand how you feel because you look good on the outside. While at the same time your body is going crazy on the inside. In March 2003, I was also diagnosed with having fibromyalgia.
But above all the pain and frustration with the disease and the doctor’s, there is one thing worse. That is when my son wants me to play with him and all I can say is “not today honey, mommy is just too sick”
There is more to the disease as far as treatment….treatments which for the moment are considered to be less than effective including the use of colchicine , cyclophosphamide ( also called Cytoxin, this was the original med I was on before being put on Imuran), and glucocorticoids for eye involvement, azapropazone and colchicine for arthritis, and acyclovir , colchicine, and topical interferon for mouth ulcers.
As with my condition, CSS there is just not enough definitive information about Bechet’s and obviously more money is needed to help with research and ultimately for a cure.