Why Research Matters...
A Scleroderma Patient and Her Son: Jane and Jack Johnson
Jack Johnson is like a lot of teenagers. He likes cheeseburgers and pizza. He enjoys watching Michigan football, follows his San Francisco Giants, and hopes one day to become a broadcaster.
His dedication and empathy came from watching scleroderma threaten his mother and influence his family.
His mom, Jane Johnson, has lived with scleroderma for almost as long as he can remember.
“When I was eight, she was diagnosed with an aggressive form of scleroderma, and when I was nine, we nearly lost her,” says Jack. “Research saved her, and research is the only way to cure her.”
Like his mother, he has worked to raise visibility of scleroderma to peers, by volunteering at fundraisers and walks. Jane had been an active fundraiser, coordinating walks and supporting a local golf tournament. Jack does his part in a variety of ways, from sharing more about scleroderma and the SRF at local events, to thinking up taglines for social media campaigns, to helping with the new SRF website.
Jack only wants her to be able to return to the daily tasks taken from her through scleroderma. At its worst Jane fell into chairs and had to be lifted back out before she could struggle to take a step. Braiding her daughter's hair or tying shoes was impossible. Playing simple games with Jack was out of the question. And exhaustion swept across her without warning, preventing her from so many things. Her diet is manageable, but highly restrictive. When her children were smaller, some of the medications that suppressed her immune system meant she had to stay away from her kids - not able to comfort them through illnesses, missing out on story times, and overburdening her husband, who became their primary caregiver.
Prior to scleroderma Jane was an active participant in life and she willingly and generously gave back to her community. With scleroderma she's forced to be an onlooker in so many ways against her will. Friends travel to participate in races raising funds for illness-stricken children and Jane cannot. Once an avid swimmer, she can't even get in the water for fear of infection, Raynaud's or the inability to propel herself. Crafts she enjoyed are out of the question. Cooking requires so much help from others and takes much more time.
Both, though, devote what they can to the SRF. Because as the SRF tagline says, "research is the key."
“Research allows me the hope of becoming a participant once more. Not just a bystander to life. The SRF gives me hope. . .hope that a cure will be found not only in time for me, but in time for all of us,” says Jane. "Then we can go back to being productive and give back to others the way we would like.”