A mother’s unfailing love – Emily’s story

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Emily’s story centers around her diagnosis, her daughter and her determination – all of which have shaped her scleroderma journey.

In 1999, Emily Woods noticed swelling in her hands to the point where she was unable to shift the rings around on her finger. Concerned, she scheduled an appointment with a dermatologist who thought the swelling might have been due to an allergic reaction. But deep down, Emily knew there was something more that Benadryl wouldn’t be able to fix.

Months later, Emily was at a plastic surgeon’s office when additional symptoms became clear. Her doctor noticed swelling in her legs and a purplish color on her hands, and suspected Emily could have Raynaud’s. With this knowledge, she scheduled an appointment with a rheumatologist. It was at her rheumatologist appointment shortly after that Emily was diagnosed with limited scleroderma, a condition which soon turned into diffuse scleroderma.

After Emily’s diagnosis, her condition held steady for a few years. Her symptoms and pain were manageable, although they kept Emily from doing some of the things she loved most. For most of her life, Emily showed horses and even became a national champion in 1988. Although scleroderma caused her to give up that passion, she leaned to set new dreams and goals for herself. And in 2002, one of these dreams came true: Emily became a mother to her beautiful daughter Emma.

Emily was thrilled to be a new mother, but within six months of her daughter’s birth, her scleroderma started to spiral. Her hands curved. The complications went internal, causing GI issues with her esophagus, breathing problems and Interstitial Lung Disease. She became very stiff and had trouble moving. She couldn’t bend her elbows or knees, get up on her own, get into bed, scratch an itch, or even feed herself without assistance. She was humbled and heartbroken, especially because of her limitations with a newborn.

As her symptoms progressed, Emily’s doctor told her to get her affairs in order. But with a one-year-old at home and an unbreakable spirit, she knew that wasn’t an option. She started reading and doing her own research and came across an article about an autoimmune disease patient who underwent a stem cell transplant at Northwestern University. Emily contacted the doctors, filled out paperwork to become a candidate and was quickly accepted. In 2004, with the assistance of her mom, Emily traveled to Northwestern. She was aware that the trial was experimental and of the large risk associated with it. But with her daughter on her mind, Emily was unafraid.

Through the process, Emily underwent a stem cell transplant but quickly experienced kidney failure. After arriving back in Dallas, Emily started kidney dialysis. She sat next to her daughter’s crib each night and prayed that she would be able to stop the dialysis. And finally, her wish came true around Christmastime when she received the OK to stop. Finally, about six months after her transplant, Emily started to see results. She regained her range of motion, was able to feed herself, get dressed, do her own hair and makeup, and most importantly, hold her daughter again.

Today, Emily’s able to be there for her daughter, now 15, as a completely hands-on mom. She’s a proud soccer mom who travels to Emma’s practices and games. She also helps other patients by sharing her story, and supports the Scleroderma Foundation Texas Bluebonnet Chapter as an active volunteer, support group leader and a member of the board of directors. She works on fundraisers for the state and for educational events.

Emily’s strength has gotten her through many difficult days with scleroderma, but her love for her daughter has inspired her, and will continue to inspire her to reach for a cure.