TA FACES IN THE CROWD

Sharon's Takayasu Story

Name: Sharon Janushewski

Gender: Female

Stage in TA (newbie, old pro/guru, in remission): Inactive old pro/guru

State or Country: Ontario, Canada

Hi Sharon, please tell me a little about you, short brief introduction or background. How did you find out that you had TA?

I am retired Medical Laboratory Technologist, married 36 years with two daughters, one grandson and another grandchild on the way.

In November of 1980, at the age of 30, my husband and I were doing some home decorating. My left arm would ache and my hand would sometimes become cold, but the pain would be relieved by putting my arm back down. About three weeks into the project, it felt like my arm was not getting enough blood circulation. I felt for a pulse, but was not able to get one in my left wrist. The next day I went to my family doctor who immediately contacted a vascular surgeon.

I saw the surgeon in the emergency department of the hospital within a couple of hours. He examined me and said there was still circulation, but it was greatly reduced. In January of 1981, I had an angiogram. The angiogram showed stenosis in the left subaxillary artery and collateral circulation. I was readmitted in March of 1981 and a balloon angioplasty of the affected area was performed. The procedure resulted in the production of a small aneurysm in the area. I had a follow up exam with the vascular surgeon in April and at that time he said there was a disease called “Takayasu’s Disease”, but with that there are no pulses anywhere, so he did not think I had it.

Everything went well for a couple of months and then I started having similar symptoms in my right arm. I had angiograms and attempted angioplasties in July and September 1981. The angioplasties were unsuccessful due to technical difficulties. After my vascular surgeon suggested a first rib resection, I sought a second opinion. The second vascular surgeon felt my problem was of a rheumatologic nature. He sent me within days to the Vasculitis in Toronto. Armed with my angiography films, blood work results and after a three hour exhausting case history interview and examination, the doctor announced that he felt I had Takayasu’s Disease.

On Christmas Eve 1981 following tests to rule out anything, but TA and over a year after my symptoms were noticeable, I finally started my first two year treatment with prednisone.


Since TA is a smouldering/brewing disease, did you find out right away that you had TA or how many years before finally being correctly diagnosed with TA?

I was diagnosed in December 1981, a year after I noticed my first symptoms, but my doctors feel the disease had likely been active for three to five years earlier, when I was having my children.

How do you feel now? What was going through your mind? What’s your outlook like? What medications are you on right now?

At present, I feel great. I was inactive on meds (Prednisone and then Methotrexate) from 1991 until 2003 and off all TA meds since 2003. I currently only take vitamins, Calcium (to prevent osteoporosis due to long term steroid therapy) and folic acid. I have always had a very positive outlook since being diagnosed with TA and monitor the course of my disease and track my blood results.

Have you been on any clinical trials for TA? Where and what was it like?

I have not been involved in any trials, but before my original treatment and on some subsequent appointments, blood was drawn to freeze as a baseline if future diagnostics tests became available. I inquired about the Longitudinal Study in the USA, but being from Canada, I am not eligible.

What’s the best and biggest lesson you’ve learned dealing with TA? Any inspiring words, amusing, funny TA stories, favourite hero, saying, books, songs, etc.?

I have never let my disease take control of my life. I have had to take medications in the past, but kept a positive attitude throughout the ordeal. Although I have had a few flares over the past 27 years, I remain optimistic that I will defeat this rare disease. My heroes are all of us with this disease. I started a support group in our area. We meet for lunch so those of us with TA can meet our peers and caregivers and vent about the disease.

Is there anything you’d like to tell other TA patients, family or people in general?

Keep on top of your treatment; don’t be afraid to ask questions of your health care providers. The more we learn about this disease, the sooner, we can find the cause and hopefully the cure.

Thank you Sharon for sharing your story.