- Churg Strauss Syndrome
- Interviews
Lori's interview
How did all start?
My whole life I was always sick with ear infections and colds etc. as a little girl. Then I had bad allergies and asthma, which led to constant sinus infections and bronchitis and pneumonia, and Bells Palsy and chronic welts on my skin that left huge scars and would burn from the inside out (biopsy showed high count eosinophils and was diagnosed as Wells Syndrome) . Then had a 4 hour reconstructive sinus surgery having polyps with high count eosinophils and had my gall bladder removed which was loaded with eosinophils and then finally got diagnosed after years and years of suffering in May 2016.
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed in May 2016 and it took over 20 years for my mystery to be solved.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I see my primary doctor, my pulmonologist, my ENT, my allergist, my endroconologist, my dermatologist, and a back specialist and my rheumotologist. and the most useful has been my rheumotologist in discovering my Churg-Strauss Syndrome.
What has been the most useful thing for you so far?
I would have to stay methylprednisone, even though it has horrible side effects.
What have been your biggest difficulties?
My worst difficulties is my gastro symptoms and my inability to move around due to severe arthritis.
How has your social and family environment reacted? Have your social or family relationships changed?
My entire family has been SO supportive and helpful. and there has been no change in my family or social relationships.
What things have you stopped doing?
I can't play sports, I can't jog, I try to walk short distances with my sons. Shopping and lifting and cleaning have become very difficult and I don't drive much anymore especially long distance.
What do you think about the future?
I am very uncertain and scared about my future health but I believe in my heart if i stay strong and positive I will thrive and beat this I have a loving and supportive family that will always be by my side.
So far, which years have been the best years in your life? What have you done during them?
I have to say the best years in my life have been the years I raised my boys and continue to do so. I had pretty healthy years from about 2004 to 2010 and also from 1986 to 1996. I was very active I played sports, I rode a bike and walked and jogged and was very active with my boys.
What would you like to do if you didn’t have your condition?
If I didn't have this condition I would love to be physically active again.
If you had to describe your life in a sentence, what would it be?
My life has had good times and bad times, happiness and struggles, but I can always count on my family's love and support, especially my sons who I love dearly.
Finally, what advice would you give to a person in a similar situation?
I would tell them to take each day in stride and know that attitude is half the battle, you must continue to fight and not let the disease win or take over your mind. You can beat it, you never know if your day is going to be good or bad, just get up each day and live your life to the fullest.
