Fourteen meetups for Atypical Hemolytic Uremic Syndrome (aHUS) will take place this year. There is an average of about 30 attendees per meeting. From Durham to Tampa and Pensacola, the meetups will take part all across the United States so parents and patients are sure to meet-face-to-face with others just like them.
Global Genes and Alexion, who together are hosting the meet ups, give parents an opportunity to learn, connect and build support systems that they might not otherwise had with such a small population of patients.
“I leave the meetups with a greater feeling of understanding and community,” says Jill Ziegler, past attendee. “The meet ups definitely take away the lonely feeling that comes along with a rare disease. And each meetup I attend, my support group grows. And we all need each other.”
aHUS was originally thought to be a pediatric disorder. That is why there appear to be more pediatric nephrologists who are aware of the disorder than adult nephrologists. It has only been in recent times that the community is seeing a much larger adult population affected.
Dr. Rita Swinford shared her observations at a previous meetup, explaining that this ultra-rare disorder affects about 200 people. Because so many adults are misdiagnosed, she feels the number of cases could actually be quite a bit higher.
A small community maybe, but those affected are eager to stay connected with others.
“Being given the opportunity to meet and exchange experiences with other patients and caregivers is beyond amazing,” says Crystal Ferreira. “It is emotionally rewarding and supportive in ways words cannot describe.”
Mother Anne Bruns has attended four of the meetups so far.
“My son has aHUS,” She says, “And we have learned something new every time. Meeting other rare moms is an instant bond and these meetups have helped our community form incredible friendships.”
Parents of these patients face plenty of challenges. With limited resources and information they rely almost entirely on each other to provide personal experiences about what works and what doesn’t.
Alexion hopes to spread awareness about a new treatment, a drug called Solaris that was original developed for another rare disorder, PNH, but has been used within the aHUs community for about five years now. When the disease is diagnosed early, it greatly increases the quality of life, especially for children. It’s breakthroughs like these that parents are hoping to discover at each gathering.
“Being the parent, it was very emotional and encouraging to meet another parent/caregiver for the first time,” enthused Barb Farcher. “Now I am one of the people presenting and giving hope and encouragement to the next family. So much information is given to you during the initial episode, it’s almost too much to absorb. The meet ups give us the chance to ask questions of the doctors, nurses, and other parents. I learned a lot I hadn’t known before and left knowing there were resources available to help navigate the world of an Ultra Rare Disease. I also left with many new friendships!”
Stay connected and find a meetup in your area by clicking here.