A Rochdale resident, Rachel Winnard, had an extremely rare genetic condition and recently spoke about the assistance she needed for her daily activities that most people take for granted. Winnard was diagnosed with Fibrodysplasia ossificans progressiva (FOP). This rare genetic illness hits one in 60 to 80 persons in the UK or 42 million people worldwide.
Winnard's condition has gotten worse over the years. She can no longer leave the house without her nappies because she can not go to the toilet without support. She has been using an electric wheelchair since lockdown. Due to her condition, the 37-year-old was incorrectly diagnosed for years as a baby and child.
I had such a great time shooting with Ebba. We were really lucky to have these conditions as it had been raining the entire week up to this point! I love how the morning light illuminates her, as well as the steam coming off the lake.
Rochdale Resident's Fibrodysplasia Ossificans Progressiva Medical History
When Winnard was 18 months old, she had benign tumors on her body but was misdiagnosed as fibromatosis. At this time, she was treated with radiotherapy and chemotherapy. Another lump was discovered when she was 9 years old after she bumped her back on the frame of a garden swing. She was treated once again with chemotherapy and radiotherapy for a year.
However, more lumps were formed on her chest. Winnard's parents were warned that the treatment would hinder their child's growth.
At age 12, a doctor diagnosed her with FOP after looking at one of her toes. Her big toe was shorter than the rest.
Winnard's typical day starts with her caregiver waking her up and giving her pain relief tablets in bed. The caregiver helps her put them in her mouth. The caregiver assists her out of bed after having her eyes cleaned.
She couldn't go to the bathroom alone, so the caregiver should accompany her and hold her hand as she walked because she had trouble balancing. Rachel could not feed herself, so her caregiver served her breakfast in her living room armchair.
The caregiver washed her hair as she could not reach her hair. She said that she used her wheelchair when she went out. She added that it had given her so much freedom. However, she had a toilet situation when she was out.
"I can't sit on a normal toilet, so I have to take my commode, but if I'm desperate, then I have nappies with me because it's just easier that way," she said.
She admitted that she had difficulty adjusting to her new way of life. Winnard loved going out with her friends but could not do it anymore. She recalled that her friends helped her when she had to take nappies on a night out.
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Fibrodysplasia Ossificans Progressiva Rare Disease and Treatment
Fibrodysplasia ossificans progressiva (FOP) is characterized by the abnormal formation of bone in areas of the body where the bone is not typically present. Such areas include the tendons, ligaments, and skeletal muscle that causes the metamorphosis of the soft connective tissues and skeletal body muscles. Then it progresses to the locking of joints, making the person's movement difficult or impossible.
A person with FOP has malformed big toes, which are present at birth.
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