Three sisters, Jeanne, Marilyn and Carol Kleyn, all joined the early research project SERA and the follow-up TIP-RA study. Their mother Peggy Kleyn was diagnosed with RA around 76 years of age.
“As a physical therapist, I have seen patients severely impacted by RA,” says Marilyn. “When I first noticed my mother’s symptoms, I knew to get her to a doctor immediately for testing which helped her get the correct treatment early on. RA is a devastating disease and if there’s anything we can do to be proactive, I’m all in.”
The sisters had many reasons to join the studies besides honoring their mother.
“We all joined to find out if we had any biomarkers of the disease and, of course, to help the research, especially since there were three of us participating,” says Carol. “I’m sure it also made Mom feel good to know we were having early checks.”
Like many families with one autoimmune disease, a different autoimmune disease is often found within the family because of genes shared between autoimmune diseases. Marilyn was diagnosed with idiopathic thrombocytopenic purpura (ITP) in her 30s. “I hope this research will help determine if there is a genetic link, and if there is a way to prevent it from occurring. If these diseases are connected and they figure something out for RA they might also be able to do something for other autoimmune diseases.”
Many autoimmune diseases are linked by the same genes, according to Dr. Jane Buckner. For instance, families with RA often also have type 1 diabetes because they share common genes. BRI scientists work to apply what they learn from one disease to other diseases.
Carol and Marilyn do not have the autoantibodies that put them at high risk for RA, but Jeanne does. As their mother did very well on a new biologic drug for RA for a number of years, Jeanne wasn’t too concerned about an initial reporting about her autoantibodies for RA. But as her mother’s health deteriorated, until her recent death at age 91, Jeanne became concerned.
“My mother was mentally bright and active, and then the RA caused her to have interstitial lung disease and she slowly deteriorated,” Jeanne says. “So now I’m very glad to know I’m at high risk.”
In consultation with her doctors, Jeanne has decided to go on a medication that may aid in preventing the disease. Though this will change her status within the research study, researchers will continue to follow her progress. The next step for RA prevention research studies will be to test medications to slow or stop the disease.
“We’re grateful to the Kleyn family for their research participation,” says Dr. Buckner. “It honors their mother that they’re willing to support research to understand this disease she suffered from and to potentially help others who would develop the disease. We’re on a steady, committed path to prevent rheumatoid arthritis.”
December 5, 2017
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