Confessions from a Patient with Behcet’s Disease

Location: Pinetops, NC, United States
RARE Condition: 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.
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. 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.

  2. 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.

  3. Leslie Keel says:

    If anyone would like to correspond & get in contact with me, please feel free to send me an email at lesliekeel32@gmail.com

  4. 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.

  5. 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 @ lesliekeel32@gmail.com 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!

  6. 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 lesliekeel32@gmail.com. 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 (kirst_8601@hotmail.com) 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!!).
      Kirsty

    • Kristi Dalby says:

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

  7. 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!! :)

  8. 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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