- Churg Strauss Syndrome
- Interviews
Carol's interview
How did all start?
In 1990 after the birth of my second son I developed asthma out of the blue. I had been a smoker so thought maybe it was not asthma but smoking related. I was told years later that I had COPD but this has been ruled out and found to be Bronchiectasis. I developed a rash and was told it's Chronic Urticaria related to the Churg Strauss. I have had several complications after surgery where I almost lost my life , internal bleeding and complications etc after routine surgery.I developed nasal polyps and sinus problems and had surgery circa 2012 which led to haemorrhaging. The polyps have returned . I'd had lots of complications, 3 miscarriages an ectopic pregnancy after being sterilised.
Do you already have a diagnosis? How long did it take you to get it?
I was admitted to hospital with Bronchiectasis and stayed a month. The Pulmonary doctor decided to check my Eosinophils and that's when he suspected Churgs Strauss this was 2014. It took approximately 1 year for the diagnosis .
For what medical specialties have you been treated? What has been the most useful specialty for your?
Rheumatology is the best department for this illness although the consultants keep moving on to pastures new.
What has been the most useful thing for you so far?
My blue badge (disability drivers badge)
What have been your biggest difficulties?
I have been faced with lots of different "difficulties" especially the reduced mobility due to the peripheral neuropathy in my legs, feet and hands.
How has your social and family environment reacted? Have your social or family relationships changed?
My family, especially my husband are very supportive.
What things have you stopped doing?
The biggest thing I had to stop is working. I find it very isolating at times as I used to work 39 hours a week, of course we miss the extra income.
What do you think about the future?
I don't like to think too far forward.
So far, which years have been the best years in your life? What have you done during them?
my 30's and early 40's were my best years.
What would you like to do if you didn’t have your condition?
I would still be a healthy person doing things any other person does , swimming walking
If you had to describe your life in a sentence, what would it be?
Painful , pill taking.
Finally, what advice would you give to a person in a similar situation?
Find a good Rheumatologist and keep them !
