Retired attorney with rare muscular disease FHSD connects with others and accelerates search for cure – TribLIVE

Posted: March 8, 2020 at 10:49 am


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Mark Christman resented being thought of as a wimp.

As a kid growing up in Indiana Township, hed always felt more like a tough guy, with the inner tenacity, drive and work ethic of a competitive athlete. Christman loved playing sports, but getting picked last on nearly every team was frustrating.

Around age 14, tasks like running laps and picking up a shovel to clean up after the family horse became unnervingly difficult. Hed lift weights for months and gain little to no muscle. And despite being relatively skinny, he had a small pot belly protruding from one side of his stomach.

In 10th grade, Christman joined the wrestling team at Fox Chapel Area High School. He got bigger but not stronger. He couldnt keep up.

He wondered what could be wrong with him.

Several months later, Christman rode the family horse without a saddle. The horse darted off at full speed, knocking him off while tangling his arm in the reins. He told his doctor about other issues the worsening weakness in his arms and legs, his lopsided belly and winged shoulder blade. The doctor sent him to a neurologist.

At age 16, Christman got a diagnosis he didnt know hed been waiting for.

Christman had been born with facioscapulohumeral disease, or FSHD, a rare form of muscular dystrophy that affects about 1 in 8,000 people. A genetic defect causes the overproduction of a protein that kills muscle cells.

The diseases severity can vary widely, from causing total blindness, hearing loss and leg and arm immobility, to people who show few to no symptoms. It has no known cure.

My parents had a really tough time with it, recalled Christman, now a 59-year-old retired business attorney, Whitehall zoning board member and board member of Trib Total Media. For me, I was almost relieved to know: OK, now I know what this is.

I grew up thinking I was a wimp, and I know Im not.

A disease with no cure yet

Christman didnt let the progressive disease get in the way of cultivating a successful professional and personal life.

After marrying his college sweetheart and passing the bar exam, he embarked on a decades-long career in business law while adapting to overcome challenges along the way, from getting around the office and climbing stairs to opening drawers and filing paperwork.

He appreciated the support of his wife, Renee, an elementary school ESL teacher, along with colleagues and strangers who stopped to help him get on the elevator, reach an item on a shelf or get up from a fall. After he opted for a wheelchair, his father drove him from the South Hills to his law firms office every day from 2002 until his retirement in 2015.

But Christman couldnt help feeling misunderstood.

Hed smile politely but felt irked when even close friends asked him, Hows your MS? in reference to an entirely different, nerve-related disease, multiple sclerosis.

A room full of strangers, a room full of friends

For 41 years, Christman never met anyone else who had the same disease as he did. A 2014 event in Boston changed that. At the FSHD Societys Connect Conference, he recalled feeling overcome with emotions when he encountered hundreds of people with varying levels of the FSHD.

The FSHD Society is a nonprofit advocacy and research grant-making group based in Lexington, Mass.

Christman, whos typically an introvert at large gatherings, still gets teary-eyed remembering it.

It was a room full of strangers, and I felt like they were my friends, he said.

Until that cathartic moment, Christman said hes not sure even he realized how isolated hed felt.

My wife is just the best thing that ever happened to me in my life, and I love her dearly but I still felt alone, he said. Everyones experience of the disease is different. But having someone whos shared some of your experiences is a really special thing.

Christman is on a mission to share that gift of connection and empowerment to others across Western Pennsylvania and neighboring states. Last year, he formed Western Pennsylvanias first chapter of the rapidly burgeoning FSHD Society. The organization hopes to accelerate getting promising treatments that could halt the diseases progression to market in as soon as five years.

Christman is searching for more participants and their loved ones to join the group, with at least four dozen believed to be living in the Pittsburgh area.

I want to maybe help other people have that same experience that I had meeting people, said Christman, but also do something to raise money and push this along to find a treatment and a cure.

Christman held the chapters first meeting in June at the National Aviary in Pittsburghs North Side. Seven people attended, including two people with FSHD and their spouses. He expected everyone to want to know the latest research and tips for practical things to make life easier, like how to get an insurance company to approve a more sophisticated, joystick-controlled scooter like his.

Instead, a former coal miner told the group how hard it was for him when he was diagnosed, and a former Aviary employee lamented that her condition forced her to stop working.

All anyone wanted was to talk, Christman said. It was all about sharing.

If you really loved her, you wouldnt marry her

Christman sees the group as a chance for people to discuss things that those who dont know of the disease cant relate to, including its emotional and psychological toll.

Like how his wifes parents reacted when he proposed.

They went on a campaign to stop her, Christman said. They were worried that I wasnt going to be able to support her, and that she was going to have a terrible life. They got me aside and said if I really loved her, I wouldnt marry her.

The week of the wedding, Renees parents called and asked to attend, and did.

They never said anything again, and theyve since apologized, said Christman, adding hes gotten along well with his in-laws ever since. They know they were wrong.

At a recent FSHD event, Christman met a man who feared his children would think less of him for having the disease. Christmans now-adult son reassured the man that wouldnt be the case, that to his kids hed just be dad.

Christman said he may not have been able to play catch, but he made plenty of time to be actively involved in the lives of his three children and never felt like he let them down because of his condition. One of his daughters is a registered nurse, the second is a Hasbro engineer. His son is a teacher.

Theres a 50/50 chance of passing on the gene to a child. But some people have the disease and show few or no symptoms. Christman hasnt identified anyone in his family known to have it.

As a lawyer, Christman sometimes wondered whether his visible physical handicap impacted his clients perception of his mental capabilities.

He wasnt sure whether colleagues thought of him as overly grumpy because of partial facial muscle loss that gives him a half-frown resting face and slightly crooked smile. Hes grateful he hasnt lost his ability to smile, like many people with FSHD do.

Finding patients, expediting treatments

Once the disease gets too far along, the muscles disappear, and theyre replaced by, essentially, scar tissue, said Dr. Paula Clemens, Christmans UPMC neurologist. Once that happens, theres not really a lot of hope in treatments, unless you were to come up with a treatment that would make new muscle, such as by using stem cells an idea thats still a long way from materializing.

The FSHD Society is hoping to expedite the approval of a pill that could stop the disease from getting worse. Formed in 1991 by two patients who have FSH muscular dystrophy, the FSHD Society has focused primarily on raising money for research.

In 2014, newly hired CEO Mark Stone decided that to help expedite the development and approval of newly emerging treatment options, they needed to form local chapters in as many places as possible and get more patients involved and aware of clinical trials.

An estimated 40,000 Americans live with FSHD. But the society is only aware of about 3,500 of them. People may be living with it and not have a formal diagnosis, either because they havent sought one or their doctors havent recognized it.

This is a disease where youve got to also have a very active community, branch coordinator Beth Johnston said, so that if treatments do come to light, they do get to people and you have a disease community who can support it.

The society now has 48 local chapters in 24 states. Its goal is to raise $5 million toward treatment efforts this year.

In addition to providing education and support groups, the society is working directly with medical researchers and officials at the Food and Drug Administration to lobby for expediting clinical trials that appear promising.

Theyre helping us to understand how to accelerate the process that they have in order to get the drugs on the market, Johnston said. Weve got to activate our community. This is such a critical time in therapy development, its super important.

You just adapt

Christman continues to struggle with some tasks on a daily basis, but he has managed to work around his limitations.

You just adapt, he said.

These days, his wife helps him shower and get dressed.

His dad, 85, still drives him to Giant Eagle.

He loves using his iPad and other devices that are operated via voice control, since he has trouble punching keyboards or touch screens with more than one finger. He has a hard time lifting his hands, so hell lean in to do so instead. He can move his right leg to the side, but cant extend it forward.

Alexa, tell Delta to pour one cup water, hell say to the Amazon device beside the kitchen sink that controls the hard-to-reach faucet.

Hes thankful for the work of Carnegie Mellon University students who helped to build him a special tool to use the oven.

A few months ago, Christman and his wife completed a full kitchen renovation that includes an oven with a door that opens sideways as opposed to outward, plenty of reachable cupboard space and a special pull-out feature for him to use his Kitchen Aid mixer.

He has a passion for cooking, especially baking bread. His Whitehall homes bookshelves are stocked with titles like The Bread Bakers Guide, Baking with Julia, Bernard Claytons New Complete Book of Breads and, for meals with an extra kick, The Sriracha Cookbook.

I love it when he cooks dinner with me, said Renee Christman, recalling a recent meal featuring her husbands homemade pizza crust.

In addition to his municipal and board roles, Christman enjoys taking courses through the Osher Lifelong Learning Institute at CMU. Some of his favorites so far include the masters of architecture, the role of food in history, psychology of decision-making and a course on cybercurrency. Hes participating in a CMU pilot project to build more accessible video games.

Even though its getting tougher, hes determined to do tasks like putting on his own coat for as long as he can.

My theory is, if I just let someone else do it all the time, Im not going to be able to do it anymore, Christman said.

But Christman said hes also getting better at accepting help when he needs it. He regrets delaying getting a wheelchair for years, only to realize how much more freedom it gave him.

I want to empower patients, because a lot of people dont know a lot about their disease and whats happening to them, he said. They want to learn and be with people who have gone through similar things. They want to tell their story.

The next meeting of the FSHD Societys Western Pennsylvania chapter is scheduled for 1 to 3 p.m. April 5 at the Carnegie Library branch in Pittsburghs Squirrel Hill neighborhood. For more information, go to FSHDSociety.org, email WesternPAChapter@fshdsociety.org or visit the group on Facebook.

Natasha Lindstrom is a Tribune-Review staff writer. You can contact Natasha at 412-380-8514, nlindstrom@tribweb.com or via Twitter .

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Retired attorney with rare muscular disease FHSD connects with others and accelerates search for cure - TribLIVE

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March 8th, 2020 at 10:49 am

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