For the Lupus Foundation of America Shaun Triggs, Regional Director for Pennsylvania and the Delaware Valley, and Lynai Jay, Support Group Leader, Ambassador and Lupus patient, discussed the foundation that works toward improving the lives of people affected by Lupus through research, education, support and advocacy. Shaun discussed their approach, reduce the time to diagnosis, make sure people with lupus have access to safe and effective treatment and offer direct services. Lynai spoke of the difficulty in diagnosis most experience, an average of seven years. While she had symptoms from high school she was treated for several different ailments before her diagnosis, doctors were treating her symptoms without discovering the underlying condition. They described lupus as a ‘mystery’ disease, it can appear in different forms at different times for different patients and there is no single test for it. For Lynai, her pulmonary system was affected, for others it could be muscular or digestive.
Shaun described the need to educate the different communities – 90% of those diagnosed are women and people of color are affected 2 to 3 times as often – about the disease, he encourages us to support and enroll in RAY, Research Accelerated by You for clinical trials. He also discussed the need to inform and educate the medical profession who overlooks it or – as with Lynai, treat the symptoms. The Lupus Foundation hosts annual conferences geared toward all affected by lupus. Lynai talked about the support groups, both in person and virtual, to allow patients to share what they have learned and how they cope with the various symptoms. These support groups, as well as their annual fundraising events in PA and South Jersey help to build a ‘Lupus Community’ to help and support others with the disease.
For more information about the Foundation, its patient services and clinical trials, as well as the walks or the annual golf event, go to lupus.org/pdv