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the life expectancy of behcets

By March 29, 2010 - 1:45pm
 
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i would like to know the stage of behcets, cause my friend has had it for 14 years

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EmpowHER Guest
Anonymous

Hi. I have Behçet's disease and was diagnosed almost two years ago, but have had it for almost 5 years now. I am 18 years old and was wondering if anyone knew of any behcets specialists around the Middle East (east coast) area of the United States. I've seen upwards of 25 doctors and have only had one who has had a patient who has this disease. I was also wondering if there was more websites to find information specifically for this disease or if there was any support groups (online). Thanks.

February 11, 2016 - 4:20pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Go onto Facebook and search our Behcet's group... wonderful people with amazing love and support.

April 21, 2017 - 12:46am
EmpowHER Guest
Anonymous (reply to Anonymous)

I've had it for years. One particular bad flare up hospitalized me for 2 weeks. I went to every Dr around and none of them knew what to do with me (and like you, these Dr’s did not have other Bechet’s patients either). They put me on all sorts of prescriptions etc and nothing helped.
I got mine 99% under control by going to an allergy Dr and finding out exactly what I was allergic to an/or even mildly allergic to and avoiding these things like the plague. I was unknowingly allergic to several food items which constantly caused flare ups.
Controlling what I ate changed my life with Bechet’s. I strongly urge you to go see an allergy dr. The allergy doc will probably tell you that you are wacko and will tell you it wont help, but with Bechet’s, unfortunately you have to often fight an uphill battle with the dr’s who don’t know anything about it.
Avoiding things I’m mildly allergic to has been the ONLY thing that worked for me after years of Dr’s and all sorts of crazy scary prescription drugs. Have the allergy folks test you for everything they have.
It might work, it might not - I can just tell you it's worth a shot. Several people have managed theirs thsi way.

Also, when you have an outbreak – soak a Q-tip in tequila and put it directly on the ulcer 2-3 times per day. It hurts like nothing else, but it shortens the ulcers stay from 2 weeks down to a few days.

There are several conferences through the year on Bechet’s.
This site usually posts events in the US.

http://www.behcets.com/site/c.8oIJJRPsGcISF/b.9279471/k.C8CA/Events.htm

April 14, 2016 - 9:05am
EmpowHER Guest
Anonymous (reply to Anonymous)

Thank you for this simple conversation on something I just realized last night I might have. Everything is starting to make sense as I put the pieces together. I have a doctor's appointment Monday but I am starting to think it's with the wrong kind of doctor. Thank you again.

April 30, 2016 - 6:54pm
EmpowHER Guest
Anonymous

foods effect bechets sufferers.
keep food diary.
remember.
food has an effect while still in the gut,
so factor in the time befor it is expelled.
keep body less acid.
also.
vary foods from day to day,
eating the same food for days.
seems to build resistance to it.
booze causes havoc..shame.
lets all keep diaries

April 13, 2015 - 3:55am
EmpowHER Guest
Anonymous

my son has been afflicted with this horrible disease for about 10 or more years now. he has scars all over his body from the pus filled sores that pop up and take forever to dry up to a scab .his fingers are bad , mostly his knuckles , get knocked off and new sores pop up on top of the old ones , his face , belly, and his eyes get really blood shot ,sometimes lasting weeks. I am getting worried about his mental status and brain functions. he is so stiff and in extreme pain. it is a pattern of his joints, all of them hurt, but as an example his lower limbs mostly below his knees, will start hurting worse and so fast get so inflamed it looks like he has been on fire and he can't bear to put his feet on the ground. Please tell me where people can go to get the help they need. the doctors around here doesn't either care or don't know much about this disease. any information will be appreciated. he is getting worse and i'm afraid for him.

February 5, 2015 - 8:25am
EmpowHER Guest
Anonymous (reply to Anonymous)

Hi, I was diagnosed 9yrs ago, but can track symptoms in my medical records all the way back to as early as 2-3 yrs old. I had a lot of drs who ignored major red flags because they just didn't know. I've had several drs either acuse me of self inflicting my lesions (how do you give yourself fluid and puss filled blisters?!) or being a drug addict because of them. When i was still working as a pharmacist, I had access to a huge variety of options to try before I found what works best in terms of wound care.
After being told time and again that what I was doing was wrong, I finally found a dr who was trained in the middle east, and so was more familiar with Behcets. He was anazed at the amount of clinical research and experimenting I had done (we are all our own biggest activists!). But he also told me that what I was doing was exactly right, even though a lot of it goes against conventional medicine. So, here is what I found that works best, at least for me.
Lance the blisters as early as possible (deeper ones take longer to come to the surface)
Keep draining them until they start to turn black (necrotize).
Once the lesion is completely black and no longer sensitive to pressure or tapping the escar, begin working on taking it off. As strange as it sounds, pick at it. (keep it clean and wash hands before and after.) The escar is not a scab, but rather a very thick and fiberous material, so it may take several days. If there is an obvious pocket of puss, work on releasing that first. I've found using a sterilized pin or needle as if you were taking out a splinter extremely helpful. The longer this escar stays on, the deeper the lesion under it will be. Often there will be a secondary escar. You need to remove this as well. Keep the lesion dry! Covering it will often keep the escar moist, making it impossible to work with.
Once all of the escar and all black material is removed, especially around the edges (and you can cover loosely while working on the last of it) apply silvidine, aka ssd cream and cover with gauze and tegaderm or tape and leave on for 2-3days (in the begining, you may have to change it daily as the gauze becomes saturated.
When changing dressings, clean lesion out thoroughly, irrigate with saline then wipe dry before redressing.
Bleeding in the wound after cleaning is good. That's healthy tissue growing. But if there is more than a few spots of blood, keep cleaning out wound by dabbing it with gauze.
If the wound has tunneling, be sure it is cleaned out as best you can. A q-tip or twisting a corner of gauze are really helpful here.
As the wound begins to clear, there may be some loose skin sloughing of around it, make sure to wipe that off to avoid reblistering.
Once it is no more than a surface scab, leave uncovered. Pull scabbing material off until it is completely scared. Leaving the scabs on or not removing the first new layers of loose or caloused skin more often than not will cause it to reblister.
If you find a scar starting to reblister, open it immediately. That will prevent it from becoming any bigger. I don't recamend covering it or applying ssd, as these may cause the tissue to soften and the new lesion to get bigger.
As I said, this is what works best for me. I have cut back the healing period after the escar forms from 2months to 3-4 weeks, and the healing time for an open lesion from 4-6wks to 1-2 weeks.
Always use sterile tecgnique, washing hands thoroughly and keeping area around you clean, sterilizing pins or needles, as well as tweezers (also very useful!), always using sterile gauze and clean dressings.
I would be interested to know what other wound care routines others use, and if you find this method more effective or not.

July 5, 2017 - 6:35am
EmpowHER Guest
Anonymous (reply to Anonymous)

I would bring him to a rheumatologist. That could be a doctor to help him start.

July 24, 2016 - 10:26pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Please get your son to NYC to see Dr. Yusuf Yazici with NYU Langone. He is considered as the leading specialist and runs a Behcet's clinic. I have taken my daughter three times and he helped her a lot!

June 15, 2015 - 9:20pm
HERWriter Guide

Hi Regina - Behcet’s disease is a rare, chronic disorder involving inflammation of blood vessels throughout the body. It is marked by recurrent oral and genital ulcers and eye inflammation. Symptoms of Behcet’s disease can vary from mild to very severe. Symptoms tend to appear, heal, and then recur (referred to as a flare) frequently over months or years.

You can learn more about Behcet’s disease from the EmpowHER reference page:
http://www.empowher.com/media/reference/behcets-disease

You can learn more about how to support your friend from the American Behcet's Disease Association: http://www.behcets.com/

It's not possible for us to tell you your friend's life expectancy. These resources will help you better understand the condition, what your friend is experiencing, and how you can provide support. Take care, Pat

March 29, 2010 - 6:43pm
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