“ I have an unusual diagnosis story as my daughter was diagnosed with HAE before me. My daughter was having symptoms and was taken to Children’s Hospital in Philadelphia. The doctors at CHOP diagnosed her with HAE. I had thought I could also have HAE, based on my symptoms, and the hospital referred us both to a local physician in NJ.
My local doctor has just a few HAE patients and I was hoping to work with an HAE expert. I had seen the literature about the US HAEA Angioedema Center, but didn’t think it was possible for me to get there from the east coast because of finances. The US HAE Association was able to cover the cost of flights, so it was a golden opportunity I couldn’t pass up.
I met with Dr. Christiansen at the Center. She is incredibly knowledgeable and I was very comfortable talking with her. One of the nicest parts of my visit was realizing that I’m not the only one living with HAE. Dr. Christiansen let me know others are in the same situation as me – even some having very similar symptoms. It made me feel less alone.
I learned that there is a place I can call anytime I have questions, a place that can refer me to different local doctors. I also learned about the different types of HAE research being conducted and what treatments are on the horizon. The best thing I learned is that there Center experts are looking for a cure, they are not giving up hope. I’m thankful I had an opportunity to go to the Center. I would tell anyone thinking of visiting, that it would definitely benefit them.
“ I had been a patient of Dr. Riedl’s in Los Angeles for a number of years before he moved to the US HAEA Angioedema Center at UCSD. I continued to make the trip from Los Angeles to San Diego to visit the Center because I was curious and excited to see it – something so specific to HAE. I used the on-line form to request an appointment and found it very easy to set up my visit.
The doctors at the Center are the ones that people around the world look to for expert HAE care. They understand Hereditary Angioedema and how critical it is to treat it properly. The doctors are so amazing and care so much about HAE. They live and breathe HAE and that makes them such powerful patient advocates. Almost every single HAE patient has an emergency room horror story about doctors that put you through x-rays or argued with you or your regular HAE physician about treatment.
It was so nice to have a place where you don’t have to worry about being labeled a drug seeker, a place where you aren’t put through the wringer or made to wait. The Angioedema Center is a place that feels safe. Dr. Reidl worked with me to figure out what treatment plan is best for me – what works best for my life and my specific needs, and not just provide a cookie cutter approach to treatment. And, he continues to check in with me to see if it is still the best approach. I would absolutely recommend that anyone with HAE visit the Angioedema Center.
“ I have HAE with normal C1-Inhibitor and I visited Dr. Riedl in 2014 and again at the Angioedema Center in July 2016. Before my first visit, I was taking six antihistamines, was still having a lot of swelling, and was pretty much unable to function. I had seen three different doctors, but my bloodwork always came back negative for HAE. My local doctor thought it might be Type 3 HAE, and suggested I visit Dr. Riedl. When I visited the Center, I was impressed that Dr. Riedl, himself, spent so much dedicated time with me, reviewing my history and photo journal and ultimately diagnosing me with HAE with normal C1-INH.
I visited the Center again this past July because I had been hospitalized a number of times recently. At this visit, Dr. Riedl changed my medications and dosages, and then worked with my local doctors. After one of my initial hospitalizations, Dr. Riedl spoke with my doctor at the hospital to educate him on HAE; how it works, what to do, and how to manage my care. I was so impressed that he would take time to support me in a crisis. The Center experts go way above and beyond to make sure we receive the best possible care.