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From Lupus Diagnosis to Fearless Patient Advocate

Meet Alyshia

Woman StandingAlyshia Merchant was always healthy, but as a busy mom, she did experience fatigue from time to time. However, it wasn’t until she was out to dinner in 2012 when the early signs of her condition became more apparent. Her friends pointed out a rash that had spread across her cheeks and nose. This innocuous comment would soon lead her to a life-altering discovery that she had Lupus nephritis, an autoimmune disease that threatened her health and quality of life. After multiple conversations with doctors who told her to get more sleep and take more vitamins, it took a fainting episode at work that landed her in the emergency room for her condition to be taken seriously. After a few tests, bloodwork, and a biopsy, her nephrologist officially diagnosed Alyshia with Lupus.

Alyshia is not alone in having trouble getting an accurate diagnosis. Lupus can be challenging to identify because it impacts many different parts of the body and presents in a variety of ways. The Lupus Foundation of America has compiled a list of common symptoms and recommends you advocate for how you feel when you speak with your doctor. They also offer a helpful symptom questionnaire to get you started.

The Start of Her Lupus Experience: Seeking Support Post-Diagnosis

After her difficult diagnosis, Alyshia was desperate to meet just one person who had a similar experience to her own but was unable to find that support and comfort she was looking for in her small community of Roanoke, Virginia. She felt alone with her Lupus diagnosis until she found PatientsLikeMe more than six years ago.

“I found out about PatientsLikeMe through a Facebook ad. I clicked on it, fell in love, and have been on it ever since. It’s a community of people who understand you. You don’t have to worry about judgment. It is a safe place for you to express how you are feeling each day without feeling like you’re complaining. Everybody just gets it. Although there are people with different illnesses, you’ll find that we’re all in this fight together – a community of survivors.”

PatientsLikeMe quickly became Alyshia’s first support group. As a young black mom, it was her first place to connect with other Lupus patients and opened her eyes to the opportunity to participate in health research. However, this was only the start of her advocacy journey. Now you can hear her speak about the importance of diversity in clinical trials on national news outlets and respected medical panels, including the recent National Institutes of Health (NIH) panel discussion on community involvement in clinical research.

Learning from a Humbling Experience

Lupus Support GroupAfter losing her hair and going through chemotherapy on her path to recovery, Alyshia decided that she didn’t want any other woman with Lupus to feel like they had to go through the process alone. Now in remission, Alyshia has dedicated her time to supporting other women dealing with this disease and helping them recognize the signs to seek an early diagnosis, which can be the difference between life and death for many.

Alyshia believes that we all go through things for a reason, and she approaches her Lupus diagnosis with the same motto each day: finding the healing that comes from helping others. She even started her own business, Making Lupus Look Good, an organization that empowers women living with Lupus and invisible illnesses to rebuild self-esteem that may have been lost as a result of their condition.

She understands how important self-confidence (and good hair!) is to many women. Her company makes custom wigs and provides photoshoots and make-overs to help remind patients they are still beautiful despite their challenges. Alyshia works hard to promote self-love and recently shared some confidence-boosting tips with the PLM community.

Alyshia’s service is far-reaching and extends well beyond her business ventures. She acts as a Chronic Disease Self-Management Workshop Leader, a Member of the Team of Advisors for PatientsLikeMe, and a Virtual Advisory Board Member for the “All Of Us” Research Program with the National Institutes of Health. Additionally, as a successful real estate agent, she donates a percentage of her earnings to fight Lupus.

Looking at the Bigger Picture

Woman SittingLupus disproportionately affects black women, with the black community representing 30-43% of this disease population, with a more significant proportion of black patients developing end-stage renal disease than their white counterparts. Additionally, there is currently a low representation of diversity in clinical research trials. As a result, clinicians may be using treatments that can lack sufficient data to prove effectiveness.

Alyshia quickly recognized that participating in clinical trials and research enables medical professionals to learn more about how the treatment works in all types of patients, ultimately leading to better, more personalized care for others in the future. When she learned about the lack of participation from African Americans in research studies, it was disheartening because she realized her community might never get the answers and treatment they truly need if they are not engaging in these studies.

Alyshia is committed to spreading the message of diversifying the medical research field and recently participated in the MedCity News INVEST Precision Medicine 2021 panel, explaining the importance of equity in precision medicine.

One Small Thing: Be an Example for Your Peers

“The African American community is untapped in so many ways and for so many reasons, but now is the perfect time for us as a community to be more engaged in our health and wellness journey because we should be in the mix of trials and genetic studies. The chance for not only myself but also my peers to become involved with health research opportunities through PatientsLikeMe has been so beneficial.

Many of these opportunities include a large population of participants from underrepresented communities, which sheds a lot of light on populations that haven’t always had a voice at the table. These programs are a great start and mitigating the mistrust that exists within the African American community when it comes to medical research.”

Learn more about Alyshia’s story, including more details on how you can take a more active role in your healthcare journey!

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