Sandra Hardin of Tarpon Springs holds up the sign that started the #IhaveheardofMG social media campaign, which Hardin began to bring awareness to her rare disease, called myasthenia gravis.
TARPON SPRINGS – About three and a half years ago, Sandra Hardin of Tarpon Springs began to feel weakness throughout her body.
The changes were slight at first: she got tired if she walked too far or stood too long. Pots and pans in her kitchen began feeling heavier than she remembered. The students she worked with in her job as a teaching assistant noticed she would shake. Tasks like washing and blow drying her hair became burdens. Even her voice changed.
“I was noticing that I was getting weaker and not able to do the same (things), but didn’t really kind of put them all together,” Hardin said.
She brushed off the weaknesses at first, figuring that maybe she just was feeling tired or run down.
“It did gradually get worse. I was struggling more each day,” she said.
It was almost six months from her first noticeable symptoms before her diagnosis finally came: myasthenia gravis, a rare autoimmune neuromuscular disorder that causes weakness in voluntary muscles. Now, Hardin recieves three days of treatment every two week to keep her muscles responsive. She has to pace herself and rest up in order to be able to attend her son's plays or participate family events. She usually uses a wheelchair during trips to the store or special outings.
“In order for me to participate with my family and enjoy certain things, I have to use those devices and try to preserve my muscle strength,” Hardin said. “I have to be proactive and always use better judgment.”
Last year, Hardin decided to help bring awareness to a disease that most people have never heard of. She made a simple poster that explained myasthenia gravis, or MG, and finished it with hashtag #IhaveheardofMG before posting a picture of herself holding it on social media.
Within days, people – from as far away as the Philippines, Scotland, England, and Denmark – were sharing her photo and making their own posters. Since then, the #IhaveheardofMG hashtag has been seen on posters outside The Today Show. Hardin was interviewed about the disease, along with her neurologist, on the weekend edition of ABC Action News.
“People were telling me in all the years that they have had myasthenia gravis, this is the first time they had ever seen so much attention get focused on MG, and that I was giving these people hope,” Hardin said.
Hardin chose the hashtag because it doesn't exclude the family and friends of patients suffering from the disease. And the trend stuck.
“People found it comforting to share posts or stories with the hashtag, knowing that when they added that hashtag, they were in fact becoming part of a community, a family that understood where they were coming from,” Hardin said. “That’s why this year, I want to build on that.”
This year, Hardin is a volunteer for the Myasthenia Gravis Foundation of America, a member of the board for the Myasthenia Gravis Awareness month this June.
“I see that as a huge compliment,” she said. “If I can do this and reach this many people … it’s amazing what we can accomplish.”
Confronting the disease
For 10 years, Hardin worked as teaching assistant for Pinellas County Schools, helping children with disabilities, even as her own symptoms progressed. One afternoon in February 2013, she was riding the bus with her students when she turned to a colleague in a sudden panic.
“I cannot walk off this bus,” Hardin remembered saying. “My legs – I cannot walk.”
She ended up in the emergency room for about a week, unable to walk, before she was transferred to ManorCare in Dunedin for occupational, physical and speech therapy.
“But the local neurologist didn’t know what was wrong or what was causing this extreme muscle weakness,” Hardin said.
Myasthenia gravis can be very hard to diagnose. There are blood tests for the disorder, but Hardin's results came back negative. The doctors in the emergency room ruled MG out as a possibility.
“At that point, they more or less brushed me off, made implications that it was stress-related, possibly in my head, which I believe is very common for people who are first getting diagnosed,” Hardin said.
Despite the lack of a diagnosis, Hardin couldn't return to work, as she still struggled to walk. She was unable to eat properly; she couldn't chew or swallow.
“My voice was extremely hoarse and weak. And just overall, I was losing control of my arms and legs and my vision,” Hardin said. “With everything getting worse, it was making every day a challenge.”
The disease can be life-threatening, if left undiagnosed, largely because one of the voluntary muscles the disorder can affect is your diaphragm, threatening the patient's ability to breath.
For her part, Hardin thought her difficulties might be related to three prior back surgeries. A doctor suggested her voice and breathing trouble could be attributed to a respiratory infection.
Hardin was advised to research a teaching facility, which is how found Dr. Lara Katzin, an assistant professor at the University of South Florida who specializes in neuromuscular diseases. It took a few months for Hardin to be seen as a new patient, but Katzin pinpointed Hardin's symptoms as myasthenia gravis almost immediately.
“By the time I got her to her, I was pretty ill,” Hardin said. “She kind of saved my life.”
Katzin started her medication right away.
“A lot of people end up suffering a lot longer than I did before diagnosis,” Hardin said. “I feel fortunate that way that I got to see a specialist when I did.”
Still, during the first year of her diagnosis, Hardin estimated that she spent more time in the hospital than at home. She didn't respond well to usual treatments for myasthenia gravis. She had a thymectomy to remove her thymus gland, a procedure that helps some patients to go into remission.
“It made no difference in my disease,” Hardin said. “No two people will respond the same way.”
That's why the Myasthenia Gravis Foundation uses snowflakes to describe patients’ varied journeys with the disease and spread awareness, according to the foundation's website. Hardin's own journey has included treatments of plasmapheresis, a permacath, an investigational type of chemotherapy called rituxan infusions and now treatments of immune globulin intravenous, or IGIV, every two weeks.
Myasthenia gravis essentially is an autoimmune disease, meaning Hardin's body immune system attacks her muscles.
“IGIV floods my system with donor antibodies. Those antibodies are healthier, and that’s what helps you improve,” she explained. “But your body is still constantly making antibodies, so by the time my next treatment is due ... my donor antibodies are all gone.”
After a three-day, 10-hour-per-day treatment of IGIV, Hardin gets about two weeks of muscle strength. She likens her treatment to filling up a tank with gas; she has to be careful how she uses her supply until the next treatment.
“You end up in this roller coaster of doing better after treatment and then you go downhill, because there is no treatment out there that can replace those antibodies on a permanent basis.”
Despite the battle to find treatment, Hardin considers herself fortunate. Her husband, Rick, and her three children – Kyle, 18, Tyler, 19 and Brittany, 21 – have supportive through the stress of losing her job and struggling through hospital visits and long recovery times.
“Even though it took me some time, I did find a good doctor,” Hardin said. “I do have access to treatments, and I do have a supportive family. But there are many people who do not, who are not getting adequate treatments and timely interventions.”
There’s an easy stigma against patients with myasthenia gravis, Hardin explained, speaking one day after an IGIV treatment.
“To look at me right now, I look healthy and there’s nothing wrong with me. So if you see me in my wheelchair or having to use a handicapped parking spot, people look on: 'Well there’s nothing wrong with you,'” she said. “But in the big picture – what you can’t see – there’s actually quite a lot wrong.”
People on the outside can assume patients with MG are just lazy or exaggerating their symptoms. Awareness of the disease could help battle that stigma as well as bring necessary funding to the rare disease.
“Without funding, there is no research. And without research, we have no hope for a cure,” Hardin said.
Hardin's first son was the reason she began working with special needs students in Pinellas County Schools. Adding advocacy for a rare disease like myasthenia gravis an was an easy transition for Hardin.
“I had already become already so sensitive and ready to battle for the underdog, never thinking that I myself would fall under that category of being disabled,” she said.
Dr. Katzin sometimes will ask Hardin to talk with newly diagnosed MG patients, who are often overwhelmed and scared by the prospect of the rare disease. Hardin views her awareness campaign and advocacy for fellow patients as a calling.
“I’m just one person, but I like to think that I made a difference and continue to make a difference,” Hardin said. “Helping others – that’s what helps me.”
For more information about myasthenia gravis, visit the Myasthenia Gravis Foundation of America website at www.myasthenia.org.