My daughter, Terianne,
is a happy, five year old girl, who lives in Kentucky, USA, with her father,
little brother, and , of course, me, her mother. She is a lot like other little
girls her age... she loves to dress up, play with her dolls, and pretend she
is a grown-up,(which happens to be age 16 right now) wearing dresses and giving
orders to all the stuffed animals, and her little brother!(Who happens to be
2, and not at all co-operative with her commands to wear dresses!!)
The only difference in Terianne and other little girls her age, is that most of her friends do not have all these terrible ulcers in their mouths which make it impossible to eat sometimes, and they don't get little(and sometimes not-so-little) "bumps" all over their bodies. And most of Terianne's friends can run the length of the playground without falling, or getting so tired and weak, they have to stop and rest before they can make it back to the classroom.
These are not the only differences, but these are the ones that Terianne notices. And sometimes she asks me why can't she play offence in soccer, instead of always standing at defence. This is a very hard question to answer, not because of the soccer itself, but because when I give her an answer to this question, there are always more, and each one gets harder. How do you tell a child that she is different and will always be different? Terianne was born on September 26, 1993. She was having problems with vomiting and diarrhoea by her 2cd month. From there, she started having urinary tract problems, and frequent infections. She was anaemic from age 4 months until her 2cd birthday. The doctor couldn't figure out why. so we changed doctors when she was two. By this time, she had developed a duodenal ulcer, and was having severe pain when eating, and urinating, and was also having colon problems. Her new paediatrician, who just happened to specialise in rheumatology, immediately suspected an auto-immune disorder, as she was beginning to develop oral and genital ulcers as well.
Terianne had all the tests for antibodies ran, and everything was normal. We were thrilled, but her doc said not to get our hopes up, because that didn't mean she was healthy, just that it was going to be harder to diagnose the problem.
Three years later,
here we are, still having the same problems, and adding a few new ones, every
week, it seems. Now, not only are the ulcers getting more frequent, but Terianne
is having headaches, chest pain, shortness of breath, and these bruises that
just seem to come out of nowhere, all over her body. She is anaemic again, and
is losing weight, has a palpable spleen, and just generally looks and feels
like she has been ran down by a train. So I take her in to see her paediatrician
again, who suggests we see a rheumatologist that we had taken her to after her
first one moved out of state(The same doctor who had suspected vasculitis, or
another auto-immune from the first). I politely declined, as this other doctor
had told me, the first time she saw him, that she looked perfectly fine to him,
and that I should just be glad she wasn't in a wheelchair, like a lot of his
So, after careful consideration, and research, I found a very reputable paediatric rheumatologist in a neighbouring state, and got an appointment with him.
This doctor is the one who finally gave us the answers we have looked for all these years. Unfortunately, it was Behcet's disease. Now, everyday, I'm searching the internet, and the libraries, to try and find some info on this mystery disease. I had almost given up hope, and then I found this web site! I hope that I can learn more about this disease, and I hope that Terianne's story will help some other parent who's almost given up, find hope that there are other kids out there with this disease, and that it's not always bad; there are good days, and they make the bad ones a whole lot easier to deal with!
Terianne is my
guiding light. She makes me see everyday, that the little problems we worry
so much about, are really just grains of sand. She brings such joy and peace
to my life, and even though this disease does make her a little hard to handle
sometimes, I know that she isn't at fault, and it is more frustrating to her,
because she can't control it. And this also makes me see that none of us are
untouchable, and that life isn't always what we plan it to be, but we should
all make everyday meaningful, and memorable, just like the children do. See
the world through the eyes of children". God bless the children, and God
Bless each of us, who live with Behcet's, either directly or indirectly.