We are thrilled to announce that the 2017 South Carolina MG Walk Hero is…Lauren Jarman! Last year Lauren was able to raise over $18,000 for research. We are trying to beat that goal to fund more research and possibly find a cure for this disease.
Here is the story of the most inspiring person I have ever met, Lauren Jarman. She has defied all odds battling one of the rarest autoimmune disorders to become one of the strongest woman I know… And she just so happens to be my wife.
Lauren’s first symptom was discovered in the Spring of 2011. It was a droopy eye and some fatigue. With our wedding around the corner in June, she was concerned about her bridal photos more than anything. After several visits to the doctor, Lauren was diagnosed with a multitude of disorders such as stress, a viral illness, Lyme disease, possible brain tumor etc. Nothing definitive until one of the doctors finally requested a CT scan.
In time, they finally confirmed a diagnosis after finding a ‘mass’ in her chest. Lauren was diagnosed with Myasthenia Gravis, commonly referred to as ‘MG’ a mere 2 weeks before our wedding in 2011 and needed surgery as soon as possible. Therefore, we enjoyed our honeymoon to the best of our ability and scheduled her thymectomy (removal of thymus gland) shortly thereafter. This was the first of many hospital visits or mini ‘vacations’ as we used to call them.
Let’s backtrack for a second so you can understand the gravity of our situation. When taking our vows, we had a feeling we were in for an uphill battle with this newly diagnosed disease. Unlike other married couples who may experience this 20, 30, or 40+ years later… We started our marriage with a life changing disease, moved to a new city, a mortgage and finding jobs after college. With the help of our parents, we had a fairy tale wedding and something we will cherish for the rest of our lives. However, we started to notice more symptoms such as; slurred speech, fatigue and extreme muscle weakness.
I don’t want to focus on the pain, suffering, and negative reactions of this disease. But I do believe it’s necessary to understand the signs of MG and ‘invisible cues’ that make this such a debilitating disease to live with and terrifying to understand. A crisis can happen in an instant and you have to be prepared for a split-second decision to get to the nearest hospital. In Lauren’s case that always inevitably meant being ventilated. An easy way to understand this disease is her brain is sending messages to her muscles to function, but there is a blockade to prevent this from happening. Worst case scenario, muscles that allow you to chew, swallow and breath, do not get the signal. Hence the need for a ventilator.
After her first surgery, the realty of this disease hit us all as hard as you could possibly imagine. Lauren was placed on the ventilator for several days as we experienced her first MG crisis. From 2011-2012 Lauren had some good days but the majority were bad. There were no signs of improvement after her thymectomy; therefore we moved onto IVIG. That stabilized most of her symptoms; however, by the end of 2012, we had another crisis as we learned it only prolonged the inevitable. Lauren came home after a 12-hour shift at the hospital and was very short of breath. I rushed her to the ER, basically fought with the check-in attendant because no one understands the severity of a MG crisis. Within 15 minutes, Lauren was intubated and fought the ventilator for 5 more days until she was able to breath on her own again. This was the first time I thought I almost lost her due to the lack of awareness of this disease. The hospital check-in attendant had no idea what I was talking about and/or cared to understand our legitimate concerns.
Clearly IVIG treatments were not getting Lauren closer to remission; therefore, we tried immunosuppressant’s. After 3 failed attempts, and another ICU ‘vacation’ we began Plasmapheresis that requires an external permacatheter due to the severity of this treatment and frequency. Simultaneously, a dialysis machine removes the blood from her body, takes all of the ‘bad’ antibodies out and replaces with donor ‘good’ antibodies.
FINALLY, a treatment that could somewhat stabilize her; however, she would have to worry about infections, physical appearance, judgements from strangers etc. Although painful for Lauren, we had a chance to feel like a young married couple again until we dealt with her first infection that sparked another mini vacation with the discovery of 2 pulmonary embolism's that were travelling to her heart. She just can't catch a break!
From 2011 – present, Lauren has been admitted to the ICU 9 times and intubated for 7 of them. An MG Crisis comes quick with minimal warnings and should never be taken lightly. I have carried my wife up and down stairs, seen her almost choke on her food, fall down a flight of stairs, and almost physically stop breathing right in front of my eyes. I can’t even describe what it’s like to calm someone down when they try to ween you off the ventilator. I may be biased but Lauren has had one of the toughest roads to recovery. This disease should have consumed her physically and mentally.
Instead of backing down or feeling sorry for herself, she decided to apply to Georgetown University to get her Masters in Nursing. Furthermore, we made a promise that if she started feeling better, we would attempt to have a child while we were still ‘young’. You are looking at the proud parents of a healthy child, Charleigh Grace who was born 2 months early after Lauren caught RSV. We also discovered that Lauren had HELLP Syndrome and Preeclampsia (as if she wasn't high risk enough) that was extremely dangerous for mom and baby as the risk for losing both of them significantly increased. Ironically enough, I have truly witnessed a miracle. Charleigh Grace survived because of Lauren's treatment she was receiving for MG, and Lauren is now in remission since the birth. A beautiful ending to a truly painful story. As my father in law would say, "if the bad days weren't so bad, the good days wouldn't be so good".
Through all of this, Lauren graduated from Georgetown and is a Nurse Practitioner for Low Country Infectious Disease. After 5 years of battling, she is finally in remission and spreading awareness throughout the community. Although there was a lot of pain and suffering, we still had moments of immense joy. Fast forward to 2017, Lauren is able to go on long walks and workout again. For the first time in our married life, 2016 was the first full year Lauren wasn’t a patient in the hospital as we continue to celebrate her remission. More importantly, she is an amazing mother, wife, career driven and eager to help everyone around her before thinking of herself. She never ceases to amaze me and I couldn’t be more proud of everything she has accomplished. Never complaining or using her disease as a scapegoat for a single thing. In fact, most of her hospital stays were a result of working several 12 hour shifts and crashing when she got home. It’s difficult to see physical symptoms or understand the severity of this disease, but I hope this gives you a glimpse of what it has been like.
This disease chooses its victims at random without prejudice. Myasthenia Gravis is not well funded or known about, but it has forever changed our lives. I am proud of my wife for beating this disease and advocating for her peers. We are excited to support the Myasthenia Gravis Foundation of America (MGFA) through the MG Walk. The MGFA is the only national volunteer health agency in the United States dedicated solely to the fight against Myasthenia Gravis.