Living With Lupus: Roanoke survivor creates support group

ROANOKE, Va. (WDBJ7) -- Alyshia Merchant, a lupus survivor in Roanoke, is working to raise awareness about the disease and has created a support group for others in the area facing the daily struggle.

For Merchant, there are some days she wakes up later than most. She puts two feet on the ground, but there are some days she can't because of the disease.

"When I was twenty-three, everything just went left," she explained.

"I woke up one morning feeling exhausted and I couldn't put my finger on it, but I knew something was off."

But it wasn't just fatigue.

"Extreme headaches, lost my hair, fever vomiting, swelling in my feet and legs, butterfly rash appeared across my face," Merchant explained.

The butterfly rash Merchant describes is a key sign that she was one of more than a million Americans living with an invisible disease: lupus.

Lupus is an autoimmune disease where the body goes into overdrive, attacking foreign invaders and healthy organs like the kidneys.

"I had someone tell me once, that I didn't look sick, that was the hardest thing was having to stop working and there were now boundaries,” Merchant said.

Lupus impacts everyone differently, but two things are often the same: a lot of medication and trips to rheumatologists and other specialists.

"Kidney disease is probably the second most common manifestation," Dr. Adegbenga Bankole of Carilion Clinic said.

"You have to play well with the skin doctor because again that will be the common, certainly the lung doctor, the hematologist, you need to involve at least one or two others in the care of the lupus patient."

After a person is diagnosed, it can be difficult finding a doctor and even harder if you're not in a major city trying to manage an illness.

"We have four providers right now: three doctors and a nurse, all very capable. But you can imagine going from six or seven to four, and the surrounding area also has some retirements," Dr. Bankole said.

New patients sometimes have to wait six months to see a doctor.

According to Dr. Bankole, Carilion is recruiting recent medical school grads, but it'll be a while before those doctors are ready to treat lupus patients.

Though medical obstacles are hard, Merchant is now a warrior for others. She has created an organization called Making Lupus Look Good.

"I never want any woman that I come in contact with that has lupus to go through that alone," Merchant said.

"Even though they make this look good or make their life look good that particular day, doesn't mean they aren't fighting a battle."

The organization provides a support for those battling the disease, like herself. 90% of people diagnosed with lupus are women. Most are in their early twenties.

Lupus is a disease that many people don't know they have because it can disguise itself as something else. It is fatal if not properly diagnosed and treated.