Allyson's Story

Diagnosed with Neurofibromatosis, Allyson Educates and Inspires Others on Visible Disabilities

Allyson Lejzorowicz of Walled Lake was only two months old when her mom noticed several light brown spots, so called café au lait spots on her skin. After taking Allyson to see her primary care physician at Henry Ford Medical Center-Ford Rd. in Dearborn, her journey with Neurofibromatosis began. The “brownish” skin spots and freckles under the arm pit or the groin can be a sign of neurofibromatosis type 1 (NF1), the most common of three genetic conditions that cause skin changes and tumors to form on nerve tissue.

Coping with a visible disorder

The visible tumors on her skin caused at times ridicule and judgement from kids and adults throughout her life.

As a child Allyson was teased and bullied. “I was left out of things and parents were afraid that I had chicken pox or was contagious. I remember kids calling me Elephant Man’s daughter or Ally Germs.” Allyson says even someone who she considered a close friend teased her behind her back. “She called me speed bumps at one time, she was also inspirational to me, so I forgave her.”

As an adult, Allyson says the struggles continued with kids who would whisper comments like “why does that lady have bumps on her” while the parents would hush their child. Over the years she learned many coping mechanisms to deal with her visible disorder. “I have asked parents to let me have a conversation with their child to help explain NF1,” she says. “One simple way to explain it is that everyone is different. Some people have blonde hair or blue eyes and some people have bumps on their skin. I explain up front it’s not contagious and it doesn’t hurt so you don’t have to worry about the bump on my foot.”

She notes, she has had to develop a thick skin to cope with the constant judgement. “The stares due to the bumps on my skin affect me almost everywhere I go. It has impacted job interviews, dealing with clients and everyday interactions, that’s why it’s important to educate and speak up instead of hiding and feeling bad,” she emphasizes.

Allyson finds support and resources through the Henry Ford Health team

Despite the challenges associated with neurofibromatosis, Allyson feels fortunate she has had a strong health partner with Henry Ford Health experts throughout her journey and as a mother of two girls. Grace, 14, also has neurofibromatosis and Hannah, 11, was born prematurely at 28 weeks. “Hannah had a collapsed lung shortly after birth and I credit Henry Ford with saving her life,” she says.

Allyson says she appreciates the compassion the Henry Ford care team has provided including the resources available through the Neurofibromatosis Clinic and her Neurofibromatosis Neurologist and Clinic Lead, Tobias Walbert, M.D, Ph.D.

“I have had several tumors removed including on my neck, collar bone and tail bone and at all times, the clinicians at Henry Ford have supported and empowered me to make the decision based on what’s important to me,” she notes. “Dr. Walbert is not only very detailed and thorough, he is so much fun and makes you feel like a friend rather than just another number at the hospital,” she adds.

“We’re trying to see the whole person,” explains Dr. Walbert. “We support each and every one on their journey.” He says during a monthly multidisciplinary conference, Henry Ford experts discuss complex issues and how to best approach treatment. “It takes a team to tackle the three types of neurofibromatosis, NF1, NF2, and schwannomatosis. Allyson is such a positive role model and leader.”

The importance of family care at Henry Ford was evident when Allyson took her daughter Grace, a dancer, to a local urgent care center after fearing she had a torn meniscus. X-rays revealed bone lesions which can be associated with cancer. Her Henry Ford Pediatric Neurologist Jules Constantinou, M.D. put her at ease. “I reached out to him and he explained that in almost all cases these bone lesions related to neurofibromatosis are not a cause for concern.” Allyson was also able to receive prompt neuropsychology testing for Grace related to attention deficit disorder concerns to help her succeed in school as well.

Allyson’s action plan to raise awareness of NF

Despite Allyson’s busy life as a mother of two and working with her loving husband Damian on their car detailing business Exquisite Car Care, she makes it a priority to educate others about the disorder.

“I have been fortunate to meet some wonderful people in the NF community and have taken leadership roles in NF walks and events to secure sponsorships and raise awareness,” Allyson says proudly. She and Dr. Walbert have also been featured in a video to raise awareness of NF as part of an annual benefit fundraising effort for NF Forward, the local Detroit charity raising funds for gene therapy and vision restoration research.

Words of wisdom for others with NF

Allyson emphasizes that although she has struggled mentally to deal with the cosmetic issues with NF, she realizes there are those with NF who have more significant medical challenges than just cosmetic issues. She says her condition can also be a blessing because she learned tolerance and empathy for those with differences and disabilities at a young age. “I am a soul with a shell that happens to have NF and feel fortunate to have a husband who loves me for who I am inside and out. Because of NF, it has helped me make smarter decisions in relationships and in general. Thanks to advice from my mom, when negativity presents itself with the disease, I have also learned more often than not to cancel that thought and find inner strength to educate others about this disorder.”

For further information visit Neurofibromatosis Clinic at Henry Ford Health.