I am sending this story with the great hope that you will help to make people aware of a disease that is often misdiagnosed and left untreated, with disastrous results. It is called BEHCETS DISEASE and it a very rare, chronic autoimmune disorder. There is very little known about the disease and because of this, many sufferers go on for years without knowing what is wrong with them, being mistreated, as well as, misdiagnosed – or only being treated for that one particular symptom that has occurred with a “Flare-Up”. There is not cure for this illness and if left untreated, leads to blindness, neurological disorders, stroke and even death – due to complications with other conditions that the disease has grown to. This is my story…
My name is Lynette Lomus. I am a mother of six and grandmother to two. I live what I think is a very simple life with my husband and children. I am a computer support specialist at a University in Philadelphia. It is hard to decide where to begin, so I will, like many others whose stories I have read, start at the beginning. I remember being about six or seven when I got an illness that my mother called "ULCER MOUTH". I had a multitude of mouth ulcers that remained with me for two - three weeks. My mother told me that I almost died, because after two weeks in bed and NO physicians care, she could not wake me. It was then that the doctors told her if she had not brought me in, I would have been dead the next day. In those days, parents did not always take you to the doctor. There were home remedies and their own experiences so they thought there was no need. Thank God she could not wake me or maybe I would not be here. I guess that was my first experience and I have had other incidences since I was a child. My most memorable event occurred four years ago when I had this excruciating pain and made a big discovered - VAGINAL ULCERS. They were quite large and like I said, excruciatingly, horribly painful. I went to my general physician who then referred me to a new gynecologist. She was completely baffled! In a week the ulcers had doubled in size and were 10 times more painful than the week before. At this point, I could not sit down and could barely walk. I returned to her and she gave me medication for Herpes and ran the test for it, other sexually transmitted diseases and AIDS. Of course she was convinced that that is what it was going to be. The results came back negative on all counts, so by this time not only was she confused, but she showed me her fear of me. I actually said to me " Ms. Lomus, if I did not know better, I would think that you had "FLESH EATING DISEASE". Of course, I became extremely panicked. She then prescribed oral medication for the pain, as well as, Lidocaine to apply directly to the lesions. (that were still growing, by the way) I am the only woman in the office and it was hard to hide my problems. I took overdoses of pain meds to get through each day. After another week of the pain and ulcers that were still growing, surgery was decided upon. Most of the labia was removed because of the size of the ulcers and all was thought to be well. A week later, I have another eruption. (Flare-up) That is when I began to see countless numbers of doctors. I have seen General Practice physicians, Gynecology Specialists, Oncology Specialists, Gastro Specialists, Dermatology Specialists, and Infectious Disease Specialist - that tested me for things like Malaria, Yellow Fever, African Jungle Rot, and Moon Fever (the last two beings jokes, of course). No one ever helped - they just gave me more pills for the pain and sent me away. If not, then I was treated as if there was nothing wrong at all and told I had to just live with the problems – whatever they were. I have this running joke that I was left here by Aliens from the planet Saturn...making me a Saturnian. I have said that they dropped me and Superman off without any instructions. But at least Superman had holographic videos from Jorel (his father) so he knew what he was to do. I on the other hand, have no instruction manual at all. I need them to return for me…it ain’t easy being raised as an Earth girl and you find out that you are not. Oh and it did not help my self esteem to have told one of my doctors use this joke and one day he said to me...."Ms. Lomus, maybe you are really from Saturn, because I have been able to help all my other patients but you - and I still don't know what to do for you” Needless to say, I never went back to him again.
For a while I had this theory that I was allergic to antibiotics. You see, this pattern developed that whenever I had dental work done - and I have had extensive work done - I would wind up being an antibiotics for too long.... sometimes as much as four to six weeks. After which time my immune system became depleted and I developed the sores. It has happened for each of the episodes I have had in the past two years, but this time, I had no dental work done and this is the worse flare-up I have had since my surgery of four years ago. Thank God my current gynecologist talked to other physicians about me and she did alot of investigating on her own. She is the one who figured out it was Behcets. I went up on the website and read so many stories that sound just like me - the way I have been feeling - the ways I have been treated. I felt so alone until now. I cried like a baby because it is such a relief to finally know what is wrong with me after four years of suffering. All the symptoms that I dismissed as other things or even ignored have been a part of this real problem. This has been hard on my family too - there are alot of us in the house (10 plus the nephew that I raised as my own) they are all dependant upon me. I am pretty much the sole support for my family and it is difficult for them when I cannot work or care for them. They have learned to be a help to each other - but they need me and I am not always there because I am confined to bed when I have flare-ups. And my mental state is not good either because I have been left to care for myself since the doctors have not known how to help until now. So it is not easy to remain stress free and not is it easy to keep depression out.
I can not begin to express my gratitude for those who have made this information about Behcets and the stories of others available to all of us. I do feel good to know that there is someone that can understand how you feel. I have since sent this website address to all the doctors who could not help me and to the doctor that cut on me (which made my situation even worse) The next time someone comes to them for help - they will not just send them away. They will not threat them badly and give them no hope. This time they will be able to help because they are now aware. My heart goes out to each and every person who is suffering with this disease. We have to stick together. There aren't that many of us so we are responsible to spread awareness to this illness. I hope everyone stays strong and continues to write in and give their stories, hope and advice. I would hope that your show would have more access to professionals who could answer so many questions that Behcets sufferers still have. I for one want to know about other topical ointments and how to check for a “Dietary Trigger”, since the disease has this, as well as, an “Emotional Trigger” I also want to know how many African-Americans have been diagnosed with Behcets. As I look at the pictures on the websites, I see only Causation-Americans. I am 38-year-old African-American woman. And too, could there also be an environmental aspect to how this disease is contracted. You see, I understand that the disease mimics Lupus and Crohn's disease. And there are three other women in my immediate area that have been diagnosed with Lupus. I know it may be a stretch, but I had to ask. Thank you for any help that you can give. I intend to be a voice in the world of Behcets, so that more people get the help the so need!!!!!
Lynette C. Lomus