Coffin-Lowry Syndrome: An Expert Hand for a Rare Disorder

As any parent will tell you, raising a child and ensuring that their needs are met is one of the most challenging long-term trials for any parent to navigate. Throughout the younger years, it is not uncommon for various health and well-being issues to take shape and drastically change lifestyles and needs. When the issues stem from a more genetic disorder, it can be emotional and challenging when the type of home care you need may not be readily available. That is typically a case with symptoms such as Coffin-Lowry Syndrome. But what is Coffin Lowry Syndrome?

It is a rare disorder linked to growth abnormalities, cardiac problems, audio and visual impairments and deformity of the spine, known medically as kyphoscoliosis.

However, the option of private care services has boosted the care skills required for this condition, such as the case of David, a client of ours whose lifestyle and comfort have been boosted by the care team at Right at Home Stockport.

Care for the Community

When our Stockport carers were contacted by David's parents, Tony and Karen, they had to raise David to the best of their abilities. With coffin-lowry syndrome being a hereditary condition, Karen was faced with a 50% chance of their boy having the condition, or 50% of their child being a carrier if they had a girl, which David's sister has a mild form.

With David now in his thirties, and having the mental age of a 5-year-old, the challenges in teaching him to read and write, speak in long sentences, or even walk - posed too much for them to handle as they got older.

With David being looked after by his parents for the vast majority of his life, the need for professional home care came following a hospitalisation in 2019. Following this hospital admission, David's condition worsened to the point where a home ventilation machine for use at night has become a reality.

Re-Assessing the Needs

After heavily re-assessing the care needs that David required and the pressure that needed to be lifted from Tony and Karen, our team was contacted by their social worker to assist, from showering and clothing David to making his bed to helping him with mobility.

Ever since being contacted, our specialist care team has supported David with two double-up calls Monday to Friday, helping him and his family with professional care. Today, our care team enjoys visiting him and our office staff willingly drop by to see him at any time.

The Facts on Coffin-Lowry Syndrome

Coffin-Lowry syndrome is estimated to affect 1 in 40,000 to 50,000 people. Though rare, it’s likely that many have a friend or family member who is directly or indirectly impacted by this condition.

If you feel there is no help for this condition, you are wrong - the support is available throughout the area with Right at Home Stockport.

The Next Steps

Caring for someone with Coffin-Lowry Syndrome can be complex, but you don’t have to go through it alone. Right at Home Stockport provides compassionate private home care services to ensure your loved one receives the individual support they need in a familiar and comfortable environment.

Our experienced carers and dedicated team offer personalised specialist care plans, tailored to meet the unique challenges of this condition while promoting dignity and independence.

Whether you’re looking for expert advice, practical home help, or a comprehensive care plan, we’re here to support both individuals living with Coffin-Lowry Syndrome and their families.

Contact us today to discuss how we can provide the right level of personal care services and assistance for your loved one.

Together, we can create a plan that brings peace of mind and ensures they feel valued and supported every step of the way.