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Janet's HAE Journey
Thank you for visiting my site!
I created this to provide information about Hereditary Angioedema and give updates on my progress. But my biggest motivation is to ask for your encouragement during my recovery. This is going to be a journey in itself, so I'll really need all the support I can get!
My story starts 8 years ago. Which. I can't believe it has been that long, Logan was just a toddler and Will was much farther from getting the facial hair he has now.
It started with hives, face swelling and anaphylaxis. But 2016 proved to be a very different year. In April 2016, I had an anaphylactic episode that sent me to the ER, but continued for days. My doctor assigned to my case to consult with me in the hospital, by sheer chance was an old High School friend with whom I graduated. Our encounter went beyond a school reunion. Dr. Reena Paul became my best advocate and pushed for a transfer to Northwestern Memorial.
After 2 days in ICU, I was given a diagnosis of Idiopathic Anaphylaxis along with every antihistamine you could imagine. The Jewish doctor even prescribed a drug that could only be procured through the Vatican City Pharmacy. I was really hoping the Pope-Mobile would deliver it!
Unfortunately, symptoms returned and were actually changing in September. The throat swelling time frame slowed, and the steroids were no longer containing the face and throat swelling. From September to the middle of December I had 4 more hospital admissions without many answers.
Amazingly, Dr. Paul was consulting on 2 of those admittances and had a new allergy team consult with me in November. Thankfully, the Allergist ran several tests and had me consult with a partner in his office who specializes in Hereditary Angioedema. Which he suspected was the condition.
During the initial consultation with the new Allergist, Dr. Pappalardo, I informed her I was going to the Mayo Clinic for a complete work up. She encouraged the trip. But unfortunately, the trip to Mayo seemed to be fruitless, as the teams there did not provide any new leads on answers and sent us home.
Thankfully, upon returning to Chicago, I immediately saw Dr. Pappalardo who read all of the notes and tests results from Mayo, assured me the trip wasn't all for nothing and gave me an initial diagnosis of Type III Hereditary Angioedema. Then she said she was sending me to San Diego...what?!
I just returned from Minnesota and now she wants me to go across the country?! Turns out. It was the best move for me. She sent me to see the top doctor in the country at the Angioedema Center in SAN Diego, CA. If there was any doctor that could confirm this rare disease, it would be him.
On January 17, 2017, after spending approximately 3 hours with him alone...he confirmed my diagnosis! He ran several tests I have never heard of to see if he could pinpoint the disease in my blood, which proves difficult with the type I have. And now I am part of the research program to help create new tests and drugs to treat the disease.
I am overjoyed that I now have a name for my condition, which makes me part of a small community of people dealing with the same thing. I also have a plan to get off of steroids and treat the condition preventatively. And I have access to the expensive medications specifically for this disease.
It may have been a long road to get where I am today. But every piece of the puzzle had to fit in at its perfect time to have the big picture all come together. I feel so blessed for the care from my classmate, the support of my family, and opportunity to see the best doctors and receive the medicine.
My second chance at a full and vibrant life will not be wasted...and I want to share that journey with you!