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Home >> Patient Advocacy >> Patient Portraits >> Muriel & Wayne
Patient Portraits
Gaucher and Parkinson’s
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Muriel (90) and Wayne Rosenfield, Ph.D. (59)
Norwich, CT
“The smell of autumn is in the air, reminding me of the anniversary when I received the news that I had a 12% chance of surviving the next five years. I think I'll go to the gym...”
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For Dr. Wayne Rosenfield, humanity remains
intact even in times of great suffering. Wayne serves as a lead psychologist in a Connecticut hospital. He knows what its like to be a patient—having struggled with Gaucher disease since youth. Nonetheless, Wayne does not consider himself a sick person. Instead, he prefers to focus on how Gaucher has strengthened his character and made him a better doctor.
Wayne’s positive outlook was repeatedly put to the test during the 34 years in which he endured severe pain and compound medical procedures. In 1993, his symptoms were significantly abated once Gaucher enzyme replacement therapy – commonly referred to as ERT - became available. Throughout bone crisis, cancer radiation, surgeries and graftings, Wayne says he managed to maintain a decent attitude. “I was never without hope and always thought tomorrow would be better.” Along the way, Wayne formed relationships within the Gaucher community from which he drew additional strength and support. But he recalls that the most memorable support came directly from inside his own family.
"When I was ten-years-old I experienced my first bone crisis—retractable pain that lasted three weeks. Who stays up with you when you’re sick? Your mom. She sat up with me when I needed someone to sit up with me."
At 90-years old, Muriel Rosenfield now requires her own special support from her son Wayne. His mother never developed Gaucher but she was a carrier of the Gaucher type-1 mutation. Like many other carriers of the Gaucher type-1 mutation, Muriel developed Parkinson’s in her elder
years. Despite all the challenges Gaucher has posed to the Rosenfield family, Wayne insists, “there are benefits to just about anything if you frame it that way.”
"This is my fabric, this is what I am made of—these particular chemicals and this is the way it works. I wouldn’t choose to have disability, trauma and all the problems, but every life teaches a different lesson. A friend of mine with the same mutation said to a group of newcomers that the greatest thing about this is the people you will meet. That’s the truth, yet we have to keep reinventing ourselves—every single day—in terms of how we are going to stay healthy and what we are going to do to be productive and remain functional."
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