- Churg Strauss Syndrome
- Interviews
Barnesn1's interview
How did all start?
Two years ago after the birth of my 2nd little boy. One night i got pins and needles in both legs. After MRI and CT scans came back clear i was rushed to hospital with intense nerve pain, weakness, high heart rate, fever, clothes, body aches, bruising. My eosinophils blood levels were at the time 3 (as apprised to not detected in healthy patients). I had been diagnosed years earleir allergic to dust mites.
Do you already have a diagnosis? How long did it take you to get it?
I have four sinus operations to remove nasal polyps in the past 6 years . to once were investigations performed as to why this was reoccurring.
For what medical specialties have you been treated? What has been the most useful specialty for your?
ENT doctors. My disease was to diagnosed until 4 weeks in hospital. An Infectious disease doctor 9who studied it in med school) pin pointed it.
What has been the most useful thing for you so far?
The 14kg weight gain was awful. A personal training last year suggested the Keto diet (restricting carbs and sugar). It has changed my life.
What have been your biggest difficulties?
Weight gain, depression, knowing my two boys may not have a mum.
How has your social and family environment reacted? Have your social or family relationships changed?
Everyone has been so supportive.
What things have you stopped doing?
Nothing. I went back to work. I was determined to set a an example for my kids. I have a phD and prior to diagnosis was in a very good position at a job i loved. Fortunately my job waited for me to get better and held my job open. I travel domestically and internationally.
What do you think about the future?
PositiveI have to be.
So far, which years have been the best years in your life? What have you done during them?
The past 4 years i have had my boys.
What would you like to do if you didn’t have your condition?
I would do exactly what i do now.
If you had to describe your life in a sentence, what would it be?
A positive person with a "i will not be stopped" attitude.
Finally, what advice would you give to a person in a similar situation?
Take your time and process the information. Do your research. Keep your medical appointments and don't stop doing the things you love.
