My daughter is living quite well with her disease.  She stopped the Methatrexate (sp?) several years ago, had a son and now is due to have
a daughter in August.  She's thrilled, I'm scared but not as scared as I was last time she was pregnant.  I guess we have to let go.  Really let
go.  And realize how little we control things.  And especially how little worry accomplishes.  I find joy in every minute I spend with her and she
sees every day as a special gift.

My daughter was diagnosed with Takayasu's (www.takayasu.org) in December of 2003, one month after marrying the love of her life. She went from ecstasy to agony. We began scrambling around for information; what is this disease, where did she get it, how long has she had it, could we have done something sooner and why did it take so long for her to be diagnosed?

An initial MRI showed she had no subclavical artery going to her left arm. An angioplasty was ordered and the procedure left her with a groin opening that took days to stop bleeding and weeks to heal. A bruise the size of a basketball and a lot of pain.

A specialist in Takayasu's was located via the Internet and through email, it was decided the proposed stent in the subclavical artery would probably not help at all. The procedure was cancelled the morning that it was scheduled. This scared me, but I was probably just being a typical mom.

It was found in the testing that she had lost three of her carotid arteries, leaving only one to feed her brain. This was why she had been experiencing headaches. One renal artery was closed and a kidney had atrophied.

The specialist put her on a high dosage of steriods and the next test indicated that the progression of the disease seemed to be arrested. The side effects of the steriods were horrible. All her joints ached. She gained 60 pounds and was badly bloated in her face. Her balance was affected by the sudden weight and she had some trouble balancing well enough to get around for a while. The people she worked with were shocked. She looked nothing like herself.

We began thinking back on her life and we're sure that the disease had been working for some time. We had spent a day in the emergency room three years before because she had a terrible pain in her abdomen and back. The hospital ran many tests, but she was sent home without knowing what had been wrong. The pain went away, but we now think it could have been the Takayasu's working on her. There are many random events that now seem to have pointed to this disease. For a couple of years she thought she had Chronic Fatique Syndrome because she was exhausted all the time and was too young to be experiencing such a lack of energy.

She will go to Boston next week to see the specialist and have tests run. She is hoping to have no signs of the disease progressing. She has been taken off the steroids and put on Methatraxate, which has far fewer sign effects. However, she wants to have a baby and can not get pregnant while taking the Methatrexate because it has been proven to cause birth defects. She is hoping for the go ahead to stop the medicine, be able to get pregnant, have the baby and then start back on the medicine. I, of course, am terrified at the idea but it's her life and she wants a baby more than anything.

She is 29 years old, beautiful, brilliant, has no oriental ancestry and today is taking life one moment at a time. I am writing this in a blog so that any one else who might be experiencing strange symptoms at a young age and may not fit the standard profile for someone with Takayasu's, might be able to find and begin treating for this terrible disease before reaching the level of damage that my daughter has.