Either as a patient, a parent or a caregiver–you are in the rare disease community. You know how to rely on others and how to lend support to those in need. You know how to advocate for awareness–but what about advocating for change? Have you considered the idea of getting more into the politics of rare disease legislation? Are you ready to make the jump from enthusiast to advocate? We sat down with advocate Jill Ziegler to get her take on making the leap.
Ilana Jacqueline for Global Genes: In short, what is YOUR story? How did you come to be involved in the rare disease community?
Jill Ziegler: It was a process. I am a 35 year old from Jonesboro, Arkansas and at the age of 28 I suddenly went into kidney failure due to an ultra rare genetic disease called atypical hemolytic uremic syndrome. I spent the next 3 years on dialysis. Multiple doctors around the country said a kidney transplant would never be possible. However, in late 2011 a drug called Soliris made a kidney transplant possible. With this drug and a “little help from a high school friend” I received a kidney transplant from a living donor, Lindsey. The surgery was performed by the University of Iowa. At the end of June I celebrated my four year kidney transplant anniversary.
IJ: When you were initially diagnosed, did you feel there were enough resources out there to help you understand your disease? What about the community prompted you to get involved in advocacy?
JZ: In 2008-2009– absolutely not! I felt very alone. Doctors informed me there were only about 300 cases of aHUS at that time and the majority were pediatrics. I was 28 years old. And I felt very out of place and alone. I did eventually find the foundation for children with aHUS. The group took me in and really helped me a lot by sharing my own insight and being able to offer support for others. I met many moms my age who had children with aHUS. Finally I found another adult with the disease and over time the number of adults are about equal to children.
IJ: Did rare activism work with your every-day life? What was happening before (and during) your diagnosis and treatment?
JZ Before getting sick with aHUS, I was an advocate for children with autism. I’m a pediatric occupational therapist and so becoming an advocate for myself just came natural. I had always told the families I work with that they have to be their child’s advocate. So I took my own advice and became the best advocate for myself. I was determined to get a transplant and find the best team of doctors in the U.S. I really saw a need for us adults with Ahus. Children with Ahus have their parents to advocate for them but us adults only have ourselves and our spouses. So I got involved in advocacy in as many areas as possible. And have continued that since.
IJ: What do you hope other aHUS patients will learn from your actions and work in the community? And what kind of advice would you give to the newly diagnosed?
JZ: It’s also important to me to advocate so that all patients have a consistency of care. I have a wonderful team of doctors in Iowa. But not everyone has a team like I have. So I share my experiences with newly diagnosed and other patients at meet ups around the country. And I share with them all the information and resources we have on the foundations website.
For our group with aHUS the first stop needs to be a phone call to their onesource nurse provided by Alexion. The onesource staff is so helpful and valuable to us. I would highly encourage the patient or their family to visit the website newly named The Foundation for aHUS, and check out all of the resources available. There is so much information and resources available to the newly diagnosed family. Attending a meet up hosted by either Global Genes or NORD Would also be very helpful. It’s a weekend full of SO much information, but when I was newly diagnosed these meetings did not exist. They are truly a blessing to our families and I learn something new at every meet up I attend.
IJ: What legislation/ policy goals are you looking forward to advocating for over these next few months?
JZ: I will first thank my legislators in the House for their support of the legislative package. 21st Century Cures. This will have a life changing impact on patients of rare disease. My next step will be to encourage my senators to follow suit and help get this piece of legislation on the president’s desk. I would like to see support from my legislators in research for both rare disease and kidney diseases to help prevent these disease processes.
I also will ask for support for the ESRD Medicare program to allow better access to care for patients. I totally understand this being a transplant patient. I would like to ask them to support the chronic kidney disease improvement and treatment act.
There is so much happening in the world of rare and chronic disease and Washington has the opportunity to help those of us impacted by disease.