Local Birmingham woman with rare condition praises colleagues at BCHC
A Birmingham-born woman living with a rare degenerative neuromuscular condition has praised Birmingham Community Healthcare NHS Foundation Trust (BCHC) for the life-changing care she has received.
Priyaneet Kainth from Moseley, Birmingham, lives with Charcot-Marie-Tooth Disease Type 4C (CMT4C), a rare inherited neurological condition that affects the nerves controlling movement and sensation. Whilst there is no current cure for the disease, physiotherapy and occupational therapy interventions can significantly improve a person's quality of life, and Priyaneet's story is living proof.
Despite born with the condition, Priyaneet was not diagnosed with the rare disease until she was almost 22. Her case is particularly uncommon, as CMT4C is most often seen in white men rather than women of South Asian heritage.
The now 34-year-old has received multidisciplinary care from BCHC's community services, including speech and language therapy, neurophysiotherapy, neurology, podiatry, orthotics and dietetics. Together, these services have supported her from childhood through to adulthood, helping her manage the challenges of living with a progressive condition.
A particularly important part of her care has been the support provided by West Midlands Rehabilitation Centre, located in Selly Oak.
Priyaneet recalls:
"The customised insoles I receive through the podiatry and orthotics service are absolutely essential to my daily life" she said. "They are as routine and necessary to me as brushing my teeth. Without them, I simply wouldn't be able to walk comfortably, work or maintain the quality of life I've worked so hard to build."
She also paid tribute to the therapists who have supported her throughout her journey, particularly Highly Specialist Orthotist, Qureish Shirazy, whose understanding and commitment have had a lasting impact. Like most young women, Priyaneet's sense of identity in the way she dresses is an important part of her life. Qureish and his team have worked with her to ensure that her orthotic care is adapted, and her insoles are tailored to ensure she can wear her favourite trainers.
"He has been one of the few clinicians who truly understands both my condition and the realities of navigating life with a degenerative disability. Having a rare disease means it can be exhausting to constantly explain what I need, but due to Qureish's attentiveness, it makes each visit less stressful and life a little easier.”
Reflecting on the support she has received over years by various trusts across the city, she described BCHC colleagues specifically as “an integral part” of her life.
"These professionals are often the people I rely on when there is no one else." she said. "They understand my condition, my challenges and my hopes. Even when they may not know much about my condition, they make the effort to learn, adapt and support me in the best way possible. They make me feel heard and seen."
Today, after exceeding expectations placed upon her as a child, she has built a successful career as an independent Inclusion and Disability Consultant, Trainer and is an Associate Certified Coach. She says her lived experience of CMT4C has helped shape her purpose and professional mission.
"My work is driven by a belief that when we include disabled people, we create environments that work better for everyone, both now and as we age," she said. "I also believe people do not need fixing. They need the space to hear themselves, trust themselves and lead with clarity and confidence. The support I have received from BCHC has been a foundational part of my journey."
Priyaneet's story exemplifies how, with the support of person-centred community healthcare services, people with complex health conditions can achieve their goals, maintain their independence, pursue successful careers and lead meaningful and intentional lives.