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Denise's Story

My name is Denise Drake Nichols.  I am 33 yrs. old and have complete Behcets Disease.  Behcets Disease has brought much agony, pain, sadness, and guilt to me life.

I started suffering from Behcets Disease (not yet diagnosed) after the birth of my daughter, Kali, in 1992.  (Probably since infancy)  I was 24 years old, happily married and anxious to be a mom to my beautiful daughter.  As time went on I suddenly began to lose weight, have more bigger oral ulcers, (something I've had my whole life.), joint pain, swollen ankles, knees and hands and fevers.  My one knee had to have the fluid drained twice then injected with steriods.  This was extremely painful!  I was very fatigued and thought that was just part of motherhood.  Eventually my symptoms worsened.  My oral ulcers got so big and bad I would have to go to the hospital and be put on IV's to get nourishment.  It hurt to talk, smile, cry and impossible to eat!  I lost 40 pounds in just a few weeks and thought I was going to die.

From 1992 to 1997 I suffered nearly everything associated with Behcets Disease.  Oral ulcers, vaginal ulcers, arthritis, flu-like symptoms everyday, swollen joints, fibromyalgia, extreme fatigue, diarrhea, nausea, erythema nodosum, befuddlement (BD patients know this term), fevers, acid reflux, headaches, heart problems, retinal vasculitis, vision loss, and of course SEVERE DEPRESSION.  All this time not knowing what was wrong with me.  I know people thought that I was just exaggerating, but I was not.  I knew I had something seriously wrong with me and I was very scared!  My husband, family and friends took care of me, my daughter, my house and my life.  GOD BLESS THEM!

I went to the Cleveland Clinic in Cleveland, OH and Indiana University Med Center in Indianapolis, IN.  The doctors thought possible Behcets Disease but had no way of testing for it.  

In October of 1997 (5 years later) I had a very large, extremely painful vaginal ulcer which was biopsied by my family doctor.  The biopsy was sent to local labs and  to the Mayo Clinic in Rochester, MN for further study.  And yes, it came back BEHCETS DISEASE.  I was devastated because I did a lot of research and knew this could be very bad.

I have tried every drug available for BD with no avail.

In November of 1998 the optic nerve in my right eye hemorrhaged and I lost 90% of my vision in that eye.  I endured steroid injections in my eye every other week or so for the inflammation and pain.  The shots were terrible!  To this day my left eye is 20/20 with my glasses.  THANK GOD!  But, as all BD patients know, every day is a different day and anything can happen.

As time went on after no luck with many, many drugs, I was approved to take the 1950 drug called Thalidomide.  In 1999 this drug was not FDA approved so I was considered as a study.  In 2000 Thalidomide became FDA approved and then of course there was charge of $800.00 for a 28 day supply.  RIDICULOUS!  I call this my MIRACLE DRUG.  I no longer have oral or vaginal ulcers, and many of my other symptoms improved but of course did not totally disappear.  I gained 40 pounds, because I could now eat!  That was a good feeling.

I take Sectral and Florinef for heart problems, Neurontin for headaches, Zoloft for depression, Aciphex for acid reflux, which has eroded my esophagus, Vicodin for pain, Ativan for anxiety, Compazine for nausea, Advil and Tylenol for fevers, many different eye drops, Thalidomide, INF lozenges and Birth Control pills because of the protocol for taking Thalidomide.  I feel much better, but still have a long way to go.  I have much fear of the future.

In 1997 my husband and I separated for a year and a half.  We reunited in 1998 only to divorce just recently in 2001.  We had been together 11 years and married 8 years.  My husband suffered a nervous breakdown in 1998 and was admitted to a treatment center for 8 days.  Through counseling he came to learn (and we did too) his anger towards me, my daughter, and anyone in general was due to my disease, Behcets!  He was diagnosed with severe depression and began treatment.  Things went well for a year or so but did not work out.  Unfortunately, I lost my husband because of my disease and his inability to deal with it!  He is a great guy and a great dad.  We are still close, but divorced. 

My daughter and I live with my dad and stepmom.  They are our total blessing.  I have 1 sister and 2 half brothers.  There has been no sign of Behcets with them. My mom and stepdad live in Ohio and come over often and always help me out.  Mu whole family is very supportive and helpful in many aspects.  My stepmom is my "ANGEL".  My mom has been so supportive but it is sometimes very hard for her to handle everything.  I love her dearly!

Most recently I started taking INF lozenges.  It has helped the inflammation in my right eye tremendously.  I have not had to have any eye injections since starting the injections.  I still have problems, but no shots!

Even with Thalidomide, the lozenges and numerous other medications, I still suffer from BD everyday.  Some days are good and some bad.  I live with fear and hope everyday.  My daughter shows no signs of Behcets at the present.  THANK GOD AGAIN!  She is my reason for living.

A couple months ago I lost 30% of my hearing.  I now get to deal with the thought of wearing hearing aids at the age of 33.  I am also experiencing some memory loss.

Due to taking Thalidomide for 2 years now, I have minor neuropathy (nerve damage) in my feet.  The #1 side effect of this drug is nerve damage.  After the pros and cons, it was decided to stay on the Thalidomide and pray for no more damage.

I cannot work and have not worked for over 5 years.  I have major guilt for not being able to do many things with my daughter and for myself.  I do not drive out of town due to my vision loss.  Thankfully, my family and friends help me (us) with everything!  Kali is doing great thanks to them.  God Bless Them!