Given how many weeks and months of the year are dedicated to large-scale disease-awareness efforts, ones focused on rare conditions can sometimes slip under the radar. To that point, it’s unlikely that most people are aware that the week of June 13 has been designated as Self-Care Week for the cystinosis community.
The patient community may number only around 600 in the United States, but Horizon Therapeutics hopes to punch above its weight with a pair of events designed to provide life skills to individuals with cystinosis.
Cystinosis is a disease where amino acid cystine builds up and forms crystals that damage organs, often kidneys and eyes. A diagnosis used to mean shortened life spans, but advances in treatment mean that some patients survive well into adulthood
In the wake of an earlier Horizon program — “A Quest to Engage Cystinosis Patients,” which used a cartoon character to explain the condition – the company has debuted a pair of events designed to make people with cystinosis more aware of available resources.
“We saw that by providing events around a resource, we could add context about how to have conversations,” explained Horizon senior director, product communications Amanda Phraner. “We have a resource called the ‘Self-Care Project’ and this was a way to bring that to life more than just handing it out.”
Regardless of progress on the medical front, living with cystinosis remains a challenge, which is why Horizon chose to center the week’s events around self-care. First up was a conversation with Jonathan Dicks, president of the Cystinosis Research Network, about community support and resources to help with daily life. Other events will focus on bullet journaling and yoga as tools to deal with the stresses of cystinosis.
“The hope is that something will resonate in a different way and people will learn something they can do for themselves on a daily basis, whether they are caring for someone with cystinosis or living with cystinosis themselves,” Phraner said. “We want people to know that it is okay to have these emotions and understand that this is a loss, then offer them the resources to help process it.”
Following Self-Care Week, “Speak Up, Speak Out: Cystinosis and Me,” an in-person theater workshop at the Chicago Museum of Contemporary Art, will provide teenagers living with cystinosis another opportunity to engage with their peers. The workshop will be led by Patrick Lynch of Believe Limited, whose organization has created similar events for the hemophilia community.
The number of expected participants for both events — roughly 70 for Self-Care Week and 18 for the theater workshop — may seem small but in fact represent a substantial percentage of the cystinosis community.
“In this industry we create a lot of resources and we put them out there, but we don’t always tell people how to use them or bring them to life,” Phraner said. “We don’t always create meaningful context for groups within the cystinosis community like adults, parents or teens.”