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How a Diagnosis of Multiple System Atrophy Became a Blessing

Diane Graham and Elaine Douglas were married in 2013. They didn’t expect to be spending their 10th dating anniversary at the MSA Coalition Annual Patient/Caregiver Conference, but that’s where they were – and they wouldn’t have had it any other way. For this couple, getting a long-delayed diagnosis of Multiple System Atrophy and turning to the MSA Coalition has enabled them to move forward.

As is typical of Multiple System Atrophy, Diane visited multiple doctors over the course of years as her puzzling, MSACANTTAKE-Achievements-FBmultiple symptoms worsened. “It started around 2009, and it kept piling on,” says Diane. “I began to fall and was increasingly incontinent. I couldn’t sleep, and I started getting dizzy when standing up. There were many other symptoms that weren’t clearly related.” Each doctor focused on a different aspect of her condition, and each arrived at a different misdiagnosis. The most recent, just months ago, was for Parkinson’s disease. Diane was referred to a movement specialist, who made the correct diagnosis of Multiple System Atrophy.

Initially elated at not actually having Parkinson’s, Diane “freaked out” at learning that she had only years to live, and that her condition would continue to deteriorate. “As Elaine and I talked it through, we realized that knowing my true condition brought relief,” says Diane. “We turned to the MSA Coalition, and I was finally able to talk to knowledgeable people who supply information my doctor doesn’t have. I get immediate responses from people who are so willing to give.”

When Diane and Elaine told Diane’s parents, the reaction was fear and sorrow. “I told my mom not to be sad, that we were thankful for finally knowing, and I meant it,” says Diane. “Since I’ve come to understand Multiple System Atrophy, I’ve been able to communicate better with my family and friends. It has brought me peace.”

Elaine agrees. “The truth is, this has made the two of us a lot closer,” she says. “We appreciate each other, and we appreciate every moment. It feels good every time we get something done. Multiple System Atrophy took away Diane’s ability to work and to drive, but it can’t take away our love and everything we’ve accomplished in this life. It’s all still here.”

When asked about spending their 10th wedding anniversary at the Patient/Caregiver Conference, Elaine says, “We thought we were going to the Maldives, which is on Diane’s bucket list. We’re doing that next month. Today, we’re happy to be meeting people and putting faces with the names of the wonderful people we’ve been communicating with constantly.”

The most important thing about the MSA Coalition’s work, says Diane, is the research. “I hope generations behind me have a cure, and that’s what the Coalition is working toward,” she says. “Their efforts to make more people aware of Multiple System Atrophy are also very important, because most doctors just don’t know. It took us years to find a doctor who even knew what Multiple System Atrophy is. That’s why we need the MSA Coalition spreading the word. Having the correct diagnosis years earlier would have been a blessing.”

To learn more about Multiple System Atrophy, The MSA Coalition’s efforts to battle this rare disorder and how you can help, please visit www.multiplesystematrophy.org.

To learn more about how you can support The MSA Coalition’s efforts to battle this rare disorder and donate now, please visit The MSA Coalition CrowdRise Holiday Challenge fundraising page.

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