First Name: : Rhonda
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City & Country: : canton,ill
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Age: : 48
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Gender: : F
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Main symptoms; : LESSIONS IN MOUTH,VANGINA,PAIN ALL OVER BODY,LESSIONS AND ALSO RASHES ON LEGS,ARMS BLEEDING DISORDER,LOST OF IRON.ALSO COLONS FISTULA,
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Your personal story;(space is limited to 3 lines) : JUST FOUND OUT 3MONTHS AGO HAVING A LOT PROBLEMS.PLEASE WRITE LOVE TO HERE FROM PEOPLE WHO ALSO GOING THROUGH WHAT I AM.
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Full email address: : rhonda_siegfried@yahoo.com
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Comments or Questions; : need a friend and just want to exchange stories please write and we can talk.
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First Name: : Ryan
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City & Country: : Chattanooga, USA
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Age: : 20
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Gender: : Mail
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Main symptoms; : Neuro-behcets.
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Your personal story;(space is limited to 3 lines) : At 18 we thought it was RA. At 19 i had a stroke and was thought to have a brain tumor. it was Behcets.
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Full email address: : temple3752@bellsouth.net
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Comments or Questions; :
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First Name: : Ken Moran
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City & Country: : Port Alberni B.C.
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Age: : 58
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Gender: : male
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Main symptoms; : Have had mouth ulcers,penile and scrotom sores, headache,dizzyness,fainting,cystitis,IBS,ulcers on feet, avm on wrist cant remember them all.NO LIFE.
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Your personal story;(space is limited to 3 lines) : Had this since about 1963 still dont have a diagnosis but am convinced myself. eye problems are getting scarry giant floaters and lots of eye and head pain
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Full email address: : danaseeker@yahoo.ca
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Comments or Questions; : I used to live in kitchener,born in London. I Think this is childhood lead poisoning.Was a mechanic and welder.Any one near me in B.C.
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First Name: : Norma
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City & Country: : Proctor British Columbia
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Age: : 41
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Gender: : Female
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Main symptoms; : Gastro - Behcets, Oral/Vaginal ulcers, lesions on the brain,
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Your personal story;(space is limited to 3 lines) : Diagnosed with Crohns for 20 years but as symptoms continued to present differently diagnosed two months ago with Behcets.
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Full email address: : norma_1965@yahoo.com
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Comments or Questions; : Hoping to find some people to talk with so I dont feel all alone
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First Name: : Hayley
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City & Country: : Mississauga
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Age: : 20 something
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Gender: : female
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Main symptoms; : mouth ulcers
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Your personal story;(space is limited to 3 lines) :
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Full email address: :
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Comments or Questions; : Has anyone got a good internet link to understand the blood tests my specialist took? I cant find anywhere that explains blood tests C4a, MSH, MMP-9, etc.
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First Name: : Katie
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City & Country: : Moutnain Cyt, USA
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Age: : 23
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Gender: : female
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Main symptoms; : mouth sores, genital sores, skin lesions, uveitis, joint inflammation
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Your personal story;(space is limited to 3 lines) : Had symptoms for the past few years, but most doctors thought I was making it up, until I almost went blind. fInally found a doctor yesterday that believed me and made the diagnosis, which was pretty easy because I am a textbook case
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Full email address: : kathleenkcox@hotmail.com
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Comments or Questions; :
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First Name: : Kari
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City & Country: : BC Canada
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Age: : 45
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Gender: : Female
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Main symptoms; : Retinal vasculitis
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Your personal story;(space is limited to 3 lines) : Behcets is our working diagnosis, due mainly to elimination of so many others.
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Full email address: : kari_lorraine@hotmail.com
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Comments or Questions; :
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First Name: : Hayley
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City & Country: : Mississauga
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Age: : twenty something
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Gender: : female
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Main symptoms; : mouth ulcers for 4 years straight
and overwhelming fatigue
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Your personal story;(space is limited to 3 lines) : worked in a toxic bldg in 2000. bldg since torn down. immune issues first, now this for 4 years.
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Full email address: : hayleyos@hotmail.com
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Comments or Questions; : Anybody found something to stop mouth ulcers? Anyone ever tried Colchicine for it? Any good doctors or naturopaths to recommend? Any help is very much appreciated!
Also: A specialist in the US prescribed a medication for cholesterol (cholesteramine) to
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First Name: : Paulette
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City & Country: : Paradsie, NL, Canada
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Age: : 35
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Gender: : Female
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Main symptoms; : vaginal/mouth ulcers; headaches; joint pain; vasculitis; extreme fatigue; starting to develop welt like symptoms on my head
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Your personal story;(space is limited to 3 lines) : symtoms for past 7 years; diagonosed 1 1/2 years ago. Tried cholochine but did not work; denied meds (steroids)..not ready! Recently seeing a homeopath (since Nov.)..symptoms are much, much better
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Full email address: : pdcurtis72@yahoo.ca
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Comments or Questions; : Im just reconnecting with this group and reading through your stories. Have hope and keep faith. Cheers! P
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First Name: : Crystal
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City & Country: : Mississauga, Canada
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Age: : 35
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Gender: : Female
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Main symptoms; : arthritis, vasculitis, ulcers, autoimmune inner ear disease, vertigo, heamaturia, tissue pain, bi-lateral pulmanary embolisms, trigeminal neuralgia, cluster migraines, pain, stiffness, tumors, cataracts and the list goes on...
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Your personal story;(space is limited to 3 lines) : I have been suffering from an undiagnosed auto-immune/connective tissue disorder for approx. 7 years. About 6 weeks ago I was diagnosed with Behcets and I am now pursuing treatment in this realm.
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Full email address: : justbcs@rogers.com
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Comments or Questions; : I would love any exchange of info, support and treatment. Specifically, I am about to begin Remicade has anyone been down this road?
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First Name: : Mary
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City & Country: : Blaine, MN
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Age: : 61
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Gender: : Female
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Main symptoms; : Retinal Vasculitis, Uveitus, Iritis, arthritis, gastrointestional, vaginal ulcers, (no mouth ulcers), CNS, Neuro BD, deaf one ear, hearing loss other, and on, and on, and on!!!
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Your personal story;(space is limited to 3 lines) : I was diagnosed with BD in 1983 when I was hospitalized with Retinal Vasculitis. Ive had various symptoms since childhood...For me, BD has presented itself full-blown symptoms and Neuro BD as well.
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Full email address: : maryburke1@msn.com
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Comments or Questions; : BD Symptoms varies from one person to another as does the treatment. A treatment that works for one, may not work for another...same holds true with BD Symptoms...they come and go...some come back again and again and then leave...then another symptom can
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First Name: : osman
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City & Country: : istanbul/turkey
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Age: : 23
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Gender: : male
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Main symptoms; : especially eye problem, ý can say that ý become specialist according to this illness :)
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Your personal story;(space is limited to 3 lines) : roferon, immuran, kolþisin, prednol... ý used a lot of drugs but most effective one is being optimistic, we should see the good sight of our lifes, I believe that one we day we will recover.
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Full email address: : aygoster@yahoo.com
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Comments or Questions; : you can write me and share your feelings, nobody can understand us, we are suffering from the same things, last year ý stayed at hospital for a week, ý didnt loose my hope, and my left eye see %80 now.
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First Name: : Darlene
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City & Country: : Barrie, Canada
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Age: :
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Gender: :
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Main symptoms; : My daughter was diagnosed with Behcets 2 years ago at the age of 12. She had severe genital sores, vomiting, fever, eye pain and joint pain.
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Your personal story;(space is limited to 3 lines) : She has been helped at Sick Kids by Colchicine. It has greatly reduced her symptoms. Im just worried about what she has to look forward to.
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Full email address: : gudskin@yahoo.com
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Comments or Questions; : Does anyone have good remission stories?
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First Name: : Beth Humphrey
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City & Country: : Kamloops, B.C.
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Age: : 51
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Gender: : Female
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Main symptoms; : genital & mouth ulcerations. joint & muscel pains, stomack problems, dry or very wattery eyes, neddle like pain in the eye, Brain Fog something awful. The more I learn about Behcets it seems that more of the problems I have had in the past fall into place
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Your personal story;(space is limited to 3 lines) : My Bechets I think goes back a long way. For the past 3-4 years I had Vaginal ulcerations that just would not heal. I was refered to a specialist in Vancouver who did biopsyies and found it was Behcet. Then a lot of other problems just seemed to fall into
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Full email address: : nobbybarney@hotmail.com
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Comments or Questions; : I am very grateful for all the support and help I have been given from the Support Group in Ontario. I feel very comfortable calling Cindy she always seems to know what I am feeling and reassures me that what I am going through others are as well. Its nic
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First Name: : Stephanie
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City & Country: : Fredericton ,NB Canada
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Age: : 38
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Gender: : FEMALE
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Main symptoms; : All symptoms too many to mention !
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Your personal story;(space is limited to 3 lines) : I am here along with the wonderful girls who found hope for us all ,Cindy & Tracey.Please email if u need a friend to talk or vent fustrations...
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Full email address: : stephkelly90@hotmail.com
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Comments or Questions; : I will gladly help in anyway possible I know how lonely I felt for so many years and thank GOD we have a place to come together and be with friends in the same boat others dont always understand!Ill help the best I can or listen when u need a friend.
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First Name: : Deborah Kelly
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City & Country: : North Vancouver, Canada
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Age: : 53
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Gender: : Female
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Main symptoms; : oral/GI ulcers, fatigue, depression, genital lesions, memory loss (recent), skin lesions/boils, etc., and on and on
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Your personal story;(space is limited to 3 lines) : Started late teens, got worse w/age, 4 years of tests to diag., now have good spec. & Phys. Keep the Faith!
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Full email address: : heartworks@shaw.ca
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Comments or Questions; : I am on disability now ~ in hindsight, wow!!! I am so pleased to have found this site. Thank you for sharing!
Deborah :o))
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First Name: : Precious Brown
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City & Country: : Grovetown Georgia
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Age: : 41
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Gender: : Female
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Main symptoms; : Joint pain,swelling of ankles,wrist,fingers, Stiff neck sores around eyes sores in mouth sores on buttocks and private area, memorie loss headaches, nausea.
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Your personal story;(space is limited to 3 lines) : had symptoms at age 20 just didnt know why i was always sick, took 5 doctors and at 41 i get diagnosed. what a life!!!
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Full email address: : precious_mason2002@yahoo.com
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Comments or Questions; : Just need to talk with someone about this i just have so many questions
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First Name: : diana
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City & Country: : TX . usa
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Age: : 40
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Gender: : F
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Main symptoms; : gastrointestinal problems,mouth ulcers,headaches,dizziness,some skin problems,joint problems, etc.etc.
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Your personal story;(space is limited to 3 lines) : I was dignosed last year on march.and every thing has been going bad for me.even im seeing 3 doctors.
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Full email address: : lopezfamilyandkids@yahoo.com
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Comments or Questions; : I was told by the doctors that i was the only one in tx with this disease. please help, and need support.
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First Name: : lisa
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City & Country: : nottingam, england
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Age: : 30
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Gender: : f
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Main symptoms; : without meds oral/genital ulcers,headaches, eye pain, skin problems, fatigue, depression,joint problms
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Your personal story;(space is limited to 3 lines) : thalidomide extremly useful. taking a break from meds to have a baby.
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Full email address: : none given
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Comments or Questions; : nicatine is said to suppress the immune system which is why many sufferers are ex smokers.
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First Name: : suzanne
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City & Country: : oshawa. canada
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Age: : 40
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Gender: : female
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Main symptoms; : mouth and nasal ulcers, joint pains, migraines, extreme tiredness, dizziness, ringing in the ears, etc, etc!!!! I think I have forgotten the rest!!!!
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Your personal story;(space is limited to 3 lines) : Everyday lately seems to be a new problem. Finding a doctor has been the most frustrating part!!!! Two of my aunts have this disease.
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Full email address: : prplpt@hotmail.com
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Comments or Questions; : Does anyone have a good eye doctor that knows about this????
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First Name: : myra jones
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City & Country: : canada
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Age: : 26
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Gender: : female
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Main symptoms; : eye problems, mouth ulsers, tiredness, cold and hot flases, mood swings a little depretion
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Your personal story;(space is limited to 3 lines) : oon may 24th of 2005 i had ulsers in my mouth and down below it got so bad i had no skin left. i went to a hospital and they sent me home i was topled over in pain in a crotch poosition. My boyfriend then took me to another hospital and they admited me ri
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Full email address: : shorty18128@yahoo.ca
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Comments or Questions; : if anyone needs to talk or is just lonley and have behcets disease they can e mail me
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First Name: : Diane
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City & Country: : Montreal, Canada
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Age: : 48
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Gender: : Female
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Main symptoms; : Oral, Genital, Vision, Skin, Arthalgia, G/I, Memory, Speech, etc...
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Your personal story;(space is limited to 3 lines) : I was diagnosed at age 40 after 10years of Test. Lived in Toronto at the time. Had to stop working.
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Full email address: : dianecyr@videotron.ca
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Comments or Questions; : Nice to see that someone did what I always wanted to do. A Canadian Behcets site. WOW
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First Name: : Karin
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City & Country: : S.Warnborough, Hampshire, UK
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Age: : 58
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Gender: : F
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Main symptoms; : Oral, genital ulcers, extreme fatigue, joint pains, feeling sick, sore eyes, eye bleed/retina, general feeling like I have Flu!
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Your personal story;(space is limited to 3 lines) : Have had B for 18 yrs, always feeling rough with various symptoms,would love to hear from others.
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Full email address: : karin@cavokat.fsnet.co.uk
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Comments or Questions; : Thanks for a wonderful supportive site and for putting us in touch with other sufferers of this awful disease!!
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First Name: : Taynara
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City & Country: : Recife ,Brasil
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Age: : 17
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Gender: : female
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Main symptoms; : oral ulcers,genital inflammations,skin problems,joint problem,patergy,fatigue,intestinalproblems,depression
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Your personal story;(space is limited to 3 lines) : I suffered with these simptoms for one year before fiding the diagnosis.Now I´m fine.I take Ascaridil
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Full email address: : taynara.alves@hotmail.com
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Comments or Questions; : I want to ask you all not to give up, not to stay bad.I know this disease is terrible and it´s hard to keep positive when you are frequently sick.But we all should know that feeling miserable makes the disease worse, it´s scientifically proved.So, please,
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First Name: : Eleanor
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City & Country: : Aberystwyth Wales
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Age: : 58
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Gender: : female
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Main symptoms; : mouth ulcers, arthritis, fatigue,
skin lesions, DVT, memory loss, pain and concentration problems.
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Your personal story;(space is limited to 3 lines) : I lived in Canada for 25 years and never had symptoms! Seem to have returned when I came back.
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Full email address: : e.schroder@talk21.com
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Comments or Questions; : glad I came accross your page, whereabouts in Ontario are you? I lived in Barrie, Ontario.
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First Name: : Ginger
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City & Country: : Willits, CA USA
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Age: : 58
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Gender: : F
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Main symptoms; : oral ulcerations
fever
fatigue
genital ulcerations
uveitis
joint pain
nausea
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Your personal story;(space is limited to 3 lines) : I was diagnosed more than 20 years ago. Currently, I am on my 2nd month of immuran (azathioprine).
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Full email address: : gbread@willitsonline.com
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Comments or Questions; : Is there a chat room?
Is there access to current research?
Are there physicians on board that can answer questions?
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First Name: : shelley
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City & Country: : hengoed, wales
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Age: : 35
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Gender: : female
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Main symptoms; : permimently sick, diahrea, never ending vomiting, dry eyes& mouth confusion, major memory loss,inabiity to stand extreme fatigue,like ive been on the pop for ages!
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Your personal story;(space is limited to 3 lines) : i have sle-8yrs, syrgeons and reynolds 3yrs and now the drs think bachets too.im only 35help!
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Full email address: : shelleyuk69@yahoo.co.uk
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Comments or Questions; : thanks, had to look up my new found friend (bachets), i do seem to be collecting them hehe gotta laugh of you go crazy!!!!!
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First Name: : Eric
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City & Country: : Canada
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Age: : 28
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Gender: : Male
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Main symptoms; : fatigue, headache,oral and genital ulcers,skin lessions, joint pain, gastro intestinal problems, loss of vision (uveitis)
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Your personal story;(space is limited to 3 lines) :
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Full email address: : zutcom@hotmail.com
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Comments or Questions; : Thanx for your support
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First Name: : Suzanne King
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City & Country: : Haverhill, Ma. US
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Age: : 42
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Gender: : female
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Main symptoms; : fatigue, headache, stiff neck, nausea, vomiting, oral and genital ulcers,skin lessions, joint pain, gastro intestinal problems.
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Your personal story;(space is limited to 3 lines) :
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Full email address: : sooxkiii@msn.com
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Comments or Questions; : In 2003 , I took a bottle of extra strength Tylonol because I couldnt take being sick any more. This is no way to live.
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First Name: : chastity
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City & Country: : Texas
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Age: : 31
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Gender: : Female
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Main symptoms; : moth ulcers, genital ulcers, dizziness, fainting, memory loss, loss of vision, headaches, fatigue, alot more....
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Your personal story;(space is limited to 3 lines) : I was diagnosed with Bechets in 2005.
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Full email address: : chastity_mdy@yahoo.com
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Comments or Questions; : Will I ever accept this and learn to deal with it?????
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First Name: : Angela
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City & Country: : Toledo,USA
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Age: : 31
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Gender: : female
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Main symptoms; : vaginal ans oral ulcers.Severe abdominal pain
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Your personal story;(space is limited to 3 lines) : I have been diagnosed with Lupus and Croans which I now find out I have neither.I also have been labeled drug seeking when I go to the ER. I have severe abdominal pain,mouth and vaginal ulcers. The doctors say they learn about it in med school but never s
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Full email address: : cmny@buckeyeexpress.com
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Comments or Questions; :
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First Name: : Pat Kovalchick
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City & Country: : HELENA-USA
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Age: : 57
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Gender: : female
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Main symptoms; : I have traveled from Alabama to London in the last 24 hours. Now I have a flare up with severe pain all over my body. Neck and head are killing me. I have been in the bed for two days, ever since we reached London. It was an 8 hour trip and seem my body c
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Your personal story;(space is limited to 3 lines) : Took forever to get dignosed after years of lesions in many places.ai take lots of medications now and the flares are further apart than before.
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Full email address: : profit003@aol.com
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Comments or Questions; : Thank you for anything you do to help the Behcets community.
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First Name: : Loretta
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City & Country: : Palestine Tx, USA
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Age: : 40
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Gender: : Female
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Main symptoms; : Mouth Ulcers, Chest pains, Joint pain, Headaches (behind eyes). Numbness hands and feet, etc. etc.
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Your personal story;(space is limited to 3 lines) : Began noticing some symptoms age 27, Progressed tremendously in late 30s.
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Full email address: : agapehillranch@aol.com
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Comments or Questions; :
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