Confessions from a Patient with Behcet’s Disease

Living with a chronic illness, like Behcet's disease, may cause newfound grief and longing for “the old life,” but Leslie takes solace in the fact that things could be so much worse.

The day you are diagnosed with any chronic illness will be the day your life will change forever and will never again be the same! So many emotions will flood your mind, and you may see your life pass in front of your eyes.

Over the days, weeks, months and years, you finally realize that this is now your life.

Many people only see a doctor when they become sick with a cold, flu, a broken bone or a sprained muscle,.  Some may never visit a doctor. Their pain will be acute, and once the cause is treated, the pain will leave. The medicine they take will only be for a short time. However, those with a chronic illness have lives that are filled with doctor’s visits, medicines, tests, pain, exhaustion and grief for “the old life.”

As you move into the existence of what is now “your life,” you will find yourself losing the ability to even enjoy what you did in your old life. Spending time with others now may even feel uncomfortable. The ability to participate in activities you once did becomes more and more difficult as the days go by. You will then find yourself wishing for your old life, even wishing you could work. Wishing you could play sports, wishing you could go to the movies, wishing you could cook, clean and dance. All of these things become much more difficult when living with an illness.

Behcet’s disease is special; it has the ability to be so unpredictable as well as unrelenting sometimes.

I have a more severe form or a “complete” form, if you will. I live with most of ALL the symptoms associated with it. I have folliculitis on my thighs and back that never goes away, central nervous system/neurological (brain) problems with inflammation, partial seizures, headaches, neck stiffness of varying degrees most of every single day, confusion, coordination issues along with balance and vertigo problems, oral ulcers and genital ulcers bi-weekly.

It used to be a constant, unrelenting problem to deal with but since I have been on CellCept, they usually are less frequent and fewer in number. Up until April 2012, I would experience 30 to 50 ulcers in my mouth all at ONE time!! It was so, so painful.

I have gastrointestinal symptoms, ulcers throughout my GI tract, severe abdominal pains and chronic diarrhea, nausea/vomiting, eye inflammation— specifically Uveitis/Iritis, joint inflammation with severe body pain of varying degrees, lung inflammation— or Pulmonary hypertension, heart issues with increased heart rate, an episode of pericarditis, palpitations, chest pain, shortness of breath, thrombophlebitis (superficial blood clots in my veins) as opposed to DVT (deep vein thrombosis) which can be fatal.

Raynaud’s phenomenon, also caused by Behcet’s, is triggered more often when I am cold or stressed. During an attack, little or no blood flows to my affected body parts, which is typically my hands or fingers and, more often than not, my feet or toes. As a result, my skin may turn white and then blue for a short time. My toenails usually turn purple/bluish, and as blood flow returns, the affected areas may turn red and throb, tingle, burn or feel numb.

It is difficult to be confined to my home, to remember a former self who was bubbly, outgoing, goal-oriented and focused on my future. The comfort of a home that so many people look forward to during their days, sometimes can become a source of suffocation or prison for me. My personality and all that I identified myself as is now a fond memory for me to grieve about every now and again. That’s a normal response when dealing with such a life-altering reality.

My new reality is like standing on the edge of a cliff with a brisk breeze blowing every single day, tethering on the brink and knowing that there’s going to be one day that the breeze turns deadly and off the edge I go.

However, I have acquired a perspective in life that few healthy people will ever know. So many people are caught up with their lives and the busy coming and going, they do not realize how much is taken for granted. The ability to get to sleep at night, to wake in the morning and get out of the bed with ease, get their tasks and responsibilities taken care of without pain, to maintain focus and alertness as necessary. To have an appetite and eat what they choose and when they choose. To actually get dressed and be able to go out of the house because they have a career or place to be— and have it not be a doctor’s appointment or a trip to pick up medication.

Mostly, they have no idea what it is like to be me!!! So while my situation in life is unfortunate and I am very limited, I know things could be so much worse! I know that with my illness things may get worse! Knowing this makes me incredibly grateful. I can appreciate each day for waking up, and I can be happy for this even when my digestive system is in ruins, or my kidneys, liver and heart are doing just enough for me to function. I choose to stay as positive as I can and be as happy as possible with what does work for me.

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Global Genes Comments

  1. Hi mr schroeder please could you forward your diet over too me please everything is worth a try. Ive just been diagnosed with behcets and feel if you have done without drugs for so long then so can i. My email is cheers mate

  2. Oh Leslie, I am so sorry for what you’re going through, and everyone on here. My belated mother had throatfuls of ulcers and recurring vaginal ulcers. She never got a firm diagnosis. At age eight, I had my first “canker sore”. At 10, my first vaginal ulcer. Since then, I have had clusters of maybe six to eight ulcers at any given time, and about one vaginal flare-up per year. Lately, I believe I’ve started menopause, but won’t know for sure for a few more months. They say you have to go a full year without a period to know – but this year, I can say my symptoms have been the worst. I have been sicker than I’ve ever been. Two horrible colds with coughs, fevers, you name it, and recurring diarrhea, tummy pain, some vomiting, weakness, fatigue, incredible neck and head pain. All this, while fighting more mouth and vaginal outbreaks (going through both, right now). I’ve never been diagnosed with BD – had a negative skin prick in 2000, but have since never looked into it. But, seeing as how I’m now missing work, due to the sporadic symptoms, you bet I’ll be asking for an actual diagnosis! On the personal side, I’m 48, and have never “settled down”. I’ve dated a lot, but BD symptoms make you feel like a social pariah. You can’t kiss properly sometimes, let alone talk or do other things! And, in my job, as an advertising sales rep, I have to be “up” and talking to people in person every day. Not always easy. I carry all manner of mouth numbing agents, but haven’t struck on one that actual works for more than ten minutes. And, if I am in menopause, my BD symptoms are flaring up in other ways – arthritic hands, the aforementioned diarrhea, etc., body and neck pain, as mentioned, and over the past few weeks, I had two weekends where my eyes looked like I had bad cases of pink eye. Here’s hoping I get an actual diagnosis soon, so I know what I’m dealing with! Still, hearing these stories on here makes me grateful, because it sounds like I have a mild case, compared to some of you! My heart goes out to you all…Sherri

    • Helmut Schroeder says:

      Dear Sherri, I live now for 27 years with diagnosed BD. My premise is that BD is a complex food allergy, aided by highly processed food. Ironically, the severe pain and discomfort BD is causing is making diet changes easier. The elimination diet plan is often used to find the foods that cause allergies, but BD is too complex to use this system. I use the “Walter Kempner MD rice diet.” Please study on the Internet his diet concept. I start with a white rice diet and some fruits and vegetables. After I have no more BD symptoms, I add more fruits and vegetables with some olive oil to my diet. I live like this for years a medication free and nearly BD free life. If you try this diet, please give me your feedback. I wish you good health!

    • Hi Sherri,

      You too have and are going through a lot. I am so sorry and I would love to help if I can. Please email me at
      I would truly like to speak with you further and be of any help I can! Keep on fighting!! Xo

  3. Helmut Schroeder says:

    I live since 1987 with diagnosed BD. I control BD with a specific diet I have developed over the years and I take no drugs. I am very allergic to soy lecithin, which is in nearly every processed food. Eating food without soy lecithin is a good start to test yourself.

    • Helmut Schroeder says:

      The 7 most common soy lecithin side effects. The most important side effect is that if we have a serious soy allergy, we should avoid all products which contain soy lecithin. Here are the main soy lecithin side effects to be aware of. 1) Gastrointestinal problems like diarrhea. 2) Change in weight (loss or gain). 3) Loss of appetite. 4) skin rashes and canker sours. 5) Nausea, dizziness, vomiting and confusion. 6) low blood pressure. 7) Blurred vision and occasional fainting. Some, if not all of those symptoms are the effects of BD. About one in 100 people have soy allergy.

      • Thanks for trying to help, but BD is NOT a food allergy. To say that it can be “cured” is misleading! I fully agree and support eating to help decrease disease symptoms and in fact believe nutrition is a very important component in fighting BD, however it can be very dangerous to take your advice. Behcet’s is very complex and everyone who lives with it needs to have reputable, knowledgeable doctors to treat them. Food can either help or hinder ones disease and symptoms, but BD attacks us systemically and one has to be under the care of doctors who can provide a muti-faced approach. I believe in using both food and medical interventions to help us with BD. I do not believe food alone or eliminating certain things as you suggest is a cure nor treatment. Again, it would be irresponsible to give the advice you have to someone with this potentially deadly disease.

        • Helmut Schroeder says:

          I thank you for your reply. I did not write BD is curable; BD is caused by genetically inherited factors and cannot be changed. In 1987, my BD diagnosis came from a biopsy of ulcers in my throat. Physicians can diagnose BD, but they don’t know what causes BD. Their drug treatments are non-specific and don’t help me. I am allergic to the soy lecithin that is in most drugs. I work closely with my physician and they support me in my drug free diet approach. I live for 27 years medication free and healthy with dormant BD and that deserves credit. You debate about drugs like my doctor, are you a physician? If we have a meeting of our minds, I like to share my writings with you on how I live medication free with BD. if you try the diet, you can keep taking your drugs as long us you thing necessary.

  4. Mindy Bruch says:

    Hi Leslie,
    My name is Mindy, I’m wife and a mom of 4 great kids ages 5 to 18! BUT- I have just been diagnosed with Behcet’s!! And I feel SO ALONE in fight. I have the most amazing husband and kids, but I still hold so much of my pain inside because there’s just no way they could understand the dail pain I’m feeling. I’m desperate for friend/friends who can understand what I’m going through. I’m SO thankful you had the courage to post your story!!! Thank you so much❤️ I have many of the same symptoms as you do, however I have been diagnosed with neurobehcets yet?? I was a competitive runner just 3 years ago placing 1st overall in my races, now my balance is so bad I’ve fallen over 3 times in the last 2 months (I’m only 38yrs old). It’s heart breaking! I’ve also had two spinal surgeries, which is what triggered my autoimmune symptoms two years ago. After my first surgery I could never heal completely, then I developed chronic fevers, and fatigue. Then came the abnormal blood counts and mouth ulcers, then vaginal ulcers, nose ulcers, ear ulcers, memory loss, spelling loss, nerve issues all over my body!! On and on… Finally after so many tests and and many differs specialists my Rhuemy diagnosed me with BD. It’s been so difficult for so many personal reasons. Will this ever get easier???

    • Hi Mandy, I am just now seeing this and I would love to talk with you further to help! I am so sorry for all you have lost, it is very hard, but I must share with you that I am currently in remission even after all the near death experiences and horrible disease symptoms I have suffered with. So yes, there is hope and you should always remember that and cling onto it!! Never never give up!! I also have a support group for all women with behcet’s disease online and I would love to tell you more! I would love if you emailed me at so we can talk further and I will do anything I can to help!! We are in this together and I truly understand all you are going through! Take care and hope to speak with you very soon!


  5. Dear All
    I have been diagnosed with BD in Bangladesh a year back. Am on prednisone, Imuran, Colcicine and ancillary medicine. Recently moved to Australia, Sydney. I am under the public health system ie Medicare. But dont known how to go about finding an expert doctor in this field. Just walk into any GP practice in the neighbourhood, explain to them the situation and hope they deal with it or refer to whomever they see fit? Is there any known specialist/hospital which I can try?

  6. Wow, great job, Leslie! So well-written, and perfectly summarized and articulated what it’s like to live with Behcet’s. I, too have complete, refractory Behcet’s, including neuro-Behcet’s (13 years now). I got so sick with opportunistic infections on CellCept that I nearly died in 2008. It has taken years to find something strong enough to take down my disease at all, without taking me down with it. Fortunately, IV Cytoxan finally seems to be helping some. I have seem you on some of the support groups, and ran across your article today; just wanted to say hi and “Great job!”

    • Thanks so very much and I wanna do anything I can to help! Im so sorry to hear and I pray that you are getting along okay. Please say hi if you “see” me online anywhere and Im always available via email at

      Take Care xo

  7. Hi everyone!!! Thank you all so much for reading. I will happily talk with anyone who needs help or any support. I will do anything I can to help point you in the right direction. Please reach me via email @

    • Helmut Schroeder says:

      Dear Leslie, my story of how I live with BD is ment for all readers and my thanks to you for creating this website to have this conversation. Let’s make this a positive exchange of ideas that look beyond medications. From my personal experience, BD is a malabsorption syndrome, coming from inherited genetic factors that will lead to those autoimmune disorders. Life comes with challenges and living with BD is our challenge.

  8. Virginia Erdie says:

    I’m 56 and right now lying in bed due to what seems to be Behcets. I have upcoming rheumatology and blood tests coming up again, but probably they will all be negative. All the tests seem to be a waste of money, time, and energy, considering there is no treatment outside of nasty steroid type drugs. I am researching any studies I can access. I came across some medical articles that suggest amino acids.

    Does anyone have knowledge of this?

    • I have been misdiagnosed with lupus for 5 years and recently after dealing with doctors assuming I was self mutilating I finally found a wonderful doctor who prescribed me saffron. I have been on this medication for 2 days and I already feel human again. I don’t know where you are but my doctor saved my life. I’m from Illinois. I hope you find the right one. I fought for almost 2 years with giant lesions and cruel physicians. My thoughts and prayers are with you.

      • Jessica, my name is Mandy and I live in Tennessee. I recently started seeing a physician in Chicago Illinois for Bechets treatment, however, I’m afraid I’m going to be let down once again. I’ve been battling Bechets and doctors since 2006 and the disease is rapidly progressing. I need help. Soon. Who is the doctor you are seeing? Thank you, in advance.

  9. Hi Leslie. First of all thank you for being so brave in sharing this with everyone out there and bringing awareness to the light. I have a 20 year old daughter that seems to be showing most of the symptoms of Behcets; however she has not been diagnosed with it as of yet. I am hoping that you are still active on this blog and are willing to be an ear that we can bend if we have any questions. Any further information that you may b able to give to us so that we may be able to help our poor daughter through this would be greatly appreciated.

  10. lauren mitchell says:

    I was diagnosed with BD when I was 12. The doctor failed to tell me what I was in for. I’ve done research on my own and I have been developing more over the years. I am now 22 and loving life. I’m just thankful for what I have and my friends and family to support me. There’s no sense in moping around all of the time thinking “when am I gonna die?” I still have problems and always will, but I live life to the fullest. Even though I’m not rich and can’t afford medicine, I just know I’m going to be okay. And thanks to Casey who has been there for me the most. Love who you are and be thankful for the life you have no matter how bad you feel.

  11. Hi everyone, my name is Dana i’m 17 and i have behcets. It all started when i came back from camping and my eyes hurt and i was seeing smoke. My mom took me to our eye doctor and he ran some test on me. He came back in the room and said i had sudo-trummer in my eyes. And that i need to get a spinal tap and a MRI done asap. The fallowing weekend i had an apt. for my MRI. it came back good. So the next thing i had done was my spinal tap and that was the worse thing anyone could ever get. I was lucky because i had 2 great doctors who did it. My tap came back as a high good. it was 23 out of 25, so i didn’t have pressure. I was in the hospital for 3 days and they sent me home. A week later i got a vaginal ulcer the size of a quarter. I didn’t know what it was at the time so i showed my mother. She freaked out and made me an apt. with my OB doctor. I showed her and she said it was Herpes. I started to cry and i wanted to yell at her, because i haven’t had sex and i knew there was no way it was herpes. She came back in with some information and said she might believe i have a rare disease called Behcets Disease. I was mad, She said no one knows how we get it or how to treat it. I think that there is someone out there that knows how to help us. After my one flare up i started having really bad headaches. They get really bad that i cry and scream. They use to be an everyday thing. A week before X-Mas i was at a family party and i freaked out. My head was throbbing, it felt like i was being shocked and i was on the floor in a corner crying and holding my head. We had bad weather that night and my mom could take me to the hospital yet. I felt so bad because i scared my family and friends and they didn’t know what to do to help me. I went back to the hospital that night and they did another test on my brain. It came back clear and they gave me a shot and sent me home. I woke up with my head hurting so they gave me these pills that knock me out for hours. I now go see 4 to 5 different doctors and for a while it seemed like it was helping. But now i have felt bad for 3 days. And i have 2 months of school left and its hard to go to school when your head is killing you and i cant control my flare ups. I need something to help me but i don’t know what. Right now i also have 9 ulcers in my mouth and i cant eat because they hurt. I would love to meet someone in my area Louisville, KY or Clarksville, IN and share stories and help each other. Thank you for reading my story :) Dana

    • Hi, Dana you might wanna stop consuming dairy products and flour. That really helped me, be healthy and excercise. It might take a few weeks if not months before you get better, if you do. I also have taken stem cell or any other brand that does the same thing. If you want details about it let me know through email, I have been good (normal) since i stopped consuming those things (mostly milk, i drink almond vanilla) and I rarely get any ulcers which I’m really happy about cause my health has gotten better to the point i have a normal life.

      • Franklin says:

        I also may have BD of a milder form all my life without realizing it until I got older and the symptoms seemed to get worse. I agree w/ Victor. You may want to try changing your entire diet to eliminate dairy and glutens. Starting w/ an elimination diet, I was able to control most of my symptoms unless I cheat. My primary doc didn’t know what I had when I complained of various symptoms which kept getting worse over time. It took a blood allergy test to reveal that my immune system was active and tested positive to many allergens including a list of foods. Ask your doctor about the link between food and controlling the symptoms of BD and make sure to do the elimination diet carefully so that all your nutritional needs are met under professional guidance. ASk your doctor about it though most doctors may not be familiar with this rare disease and its association w/ food allergies.

  12. Im a single mom of a little boy whom I adore and have been in an out of the doctor’s office for the past couple of years. I have not been fully diagnosed with Behcet’s but all symptoms point to that. It is stressful and more so since I’m the only one that cares for my son.

  13. It has been 6 days since my best friend Laura lost her life to behcets syndrome. She was only 28 years old. She would Have been 29 on january 10th. Christmas was the day she took her last breath, ending her struggle that lasted about a year. I am shocked still….my best friend whom i didn’t eve know was as sick as she was, i havent seen her in about a year and a half, and i feel like a terrible friend to have not been there for her when she needed me the most. She was amazing….a mother of two beautiful boys and a devoted wife. As well as daughter, friend, and angel. Her motto was “what doesnt kill you makes you stronger”. Always positive. I hadn’t heard of behcets until christmas when i found out she had passed away. I dont know much about it, yet i am finding myself yearning to learn about it. I know the main stuff, but i am in the dark on what she went thru the last year of her life. I was hoping that you may be able to help me out with a link or som personal experience to help me understand my best friends death. I need to know what, why, and as much as i can to cope with this cuz it is truly killing me inside not knowing. I know she had 7 or 8 surgeries over the period of time, but her funeral is on saturday, and i need to understand as much as i can before then so i can be strong for her family and have to ask as little questions i can to ease their suffering. I would be grateful for any information you are able to offer. Thank you and god bless.

  14. Leslie Keel says:

    If anyone would like to correspond & get in contact with me, please feel free to send me an email at

  15. Debbi Brown says:

    Thank you for having our story out on the WWW! You described many of the symptoms I have had over the years. After reading your story I don’t feel as alone in my journey.

    It took over 21 years and many misdiagnosis to finally you have Behcet’s disease and I am the one who brought the disease to my doctors attention because I got tired of being told I had Crohn’s then didn’t, then did, then well maybe its Lupus, well maybe not may its all in your head. So I did my research and went to OHSU in Portland Oregon and one of the doctors mentioned Behcet’s then dismissed it so I took what I knew back to my PCP in central Oregon and we sorted things out from there. After more tests and biopsies 4 out of the 5 doctors I was seeing at the time all agreed I had Behcet’s. The hold out was Rheumatologist who said he thought I had Crohn’s ccause I was to white and never been to the silk road area. That was 4 years ago.

  16. Thank you for sharing, it helps me to not feel so alone about this. I was diagnosed 7 years ago. (2006, I was 9 years old) I am now 15 years old. During these seven years, I have been through a lot that none of my friends understand. It has been very difficult for me to explain them what is wrong with me and why i often when to the doctor. I didnt want to tell them about the disease, cause i felt emberassed. I was afraid that they would not treat me like before, if I told them about the disease. I was afraid that they thought I was nasty. I cried myself to sleep every night. I wanted to be like the other kids. I got a lot of medicine that made me chubby. That’s when everyone started to tell me that I had become fat. I lost my confidence. I felt ugly, chubby and just not good enough. Today I am much better than I was in 2006, 2007, 2009, 2010 and 2011. I quit taking the medicine that made me chubby (prednisolone) But I have to take Imurel, Colchisine and Thalidomide. I hope it is possible to cure BD in the future.

    • Leslie Keel says:

      I am so sorry for what you have endured. I know many other youths in your same exact place. I can & would love to talk more with you as I can connect you with others with BD who are your same age. This is so hard for all, but it is such a cruel thi.g to deal with at such tender ages. Please contact me @ I really hope to talk with ya :) Take care!!

    • Kristi Dalby says:

      I’m 37 and struggle greatly with the weight gain caused by meds. I am more than willing to email you or vice versa…it is such a hard and embarrassing disease and I cant imagine being a teenager suffering through this. My advice, find an awesome support group for young people with BD…or even start one!!! It helps to know other people are experiencing the same thing you are!

  17. Thankyou for sharing your thought:) my 6yr old son had been diagnosed with bd and is on 1,500mg od colchicine a day including prednisone he still has flares with horrible ulsers:( I have no idea what to do for him, we live in Australia and it seems like no body knows anything..

    • Leslie Keel says:

      I am so saddened to hear that you are going through this with your son. I can only imagine the difficulty you have faced as he is a child. It is hard enough as an adult. I work with helping patients connect with organizations as well as Drs & I would gladly help in any way that I can. I do spend most of my time researching and as I stated I voluntarily help spread awareness and point ppl in the right direction. My email is Please feel free to contact me. Take care!! Leslie

    • Hi Frazel, I am a BD sufferer in Australia and I’d like you to know that while there aren’t many of us we are out there and would love to talk to you. What part of Australia are you in, please email me ( and I’d be more than happy to lend an understanding ear or point you in the direction of other patients closer to you. We need to stick together, especially since there isn’t any support available for us in Australia (yet!!).

    • Kristi Dalby says:

      1500mgs??? Wow….thats alot. Im on 0.6mg.

  18. I just want to say thank you for sharing! I have been with my boyfriend for a year & 4 months! I love him so much! He has been diagnosed with BD for a couple years now before we got together! He has all the things you talked about & sometimes he gets so sick it scares me! I dont want to lose him & I feel I have no one to talk to because I want to stay strong for him! Its so hard to watch someone you love in pain constantly! I would greatly appreciate if we could email each other just to have someone to talk to that understands! My email is adara_odeen at yahoo . com if anyone would like to message me! Thank you

    • Leslie Keel says:

      Hi sweetie!! I am just now checking back in on here & seeing your comment. Thank you so much! & I would absolutely email with you!! I know how difficult this life is, Id happily try to help & ease your mind a little bit!! I will email ya for sure. Just keep supporting him through each step!! :)

  19. It is so refreshing to see a well done, up to date personalized blog about our rare disease. I’m 44 and have suffered for the last 13 years. Took 6 years and multiple misdiagnoses. Thank you all for sharing your stories. I’m sure we would all agree it gives some hope when we are struggling, which I happen to be doing now. Thanks Leslie :)

    • Thank u so so much Kim! You keep on fighting & dig in deep! :) Also, I appreciate u taking the time to read & leave a comment. I am actually gonna be updating my story soon as Global Genes have asked me to do so. I agree it would be nice to follow this up. Take care!!

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