Home » Uncontrollable pain and muscle weakness are symptoms of THIS incurable hereditary disease

Uncontrollable pain and muscle weakness are symptoms of THIS incurable hereditary disease

The condition, called Charcot-Marie-Tooth disease is a progressive disease – meaning it gets worse over time -. And it describes a set of conditions that affect the peripheral nerves that control muscles and sensory information

can cause painful symptoms such as muscle weakness in the feet, ankles, legs and hands, arched or feet very flat or numbness in the arms, hands and feet.

can also cause uncontrollable pain, chronic fatigue, unstable ankles, balance problems and falls.

But it is also hereditary.

Alison Leach, 37, Bolton said he was concerned if I had a child that his condition would be worse than hers. She was diagnosed with CMT at 11 years old.

Nerves CMTUK

CMT currently incurable

She described how her toes keep inflammation and had begun to reshape themselves.

“was not until my late teens my neurologist told me about the hereditary aspect and the fact that there was a 50/50 chance could pass the disease if they had children.

” from an early age I knew I wanted at least two children and everything that went along with him as a husband and a lively family home, so this poses a dilemma.

“my mother passed CMT to me, but my symptoms are much worse than hers and my main concern was that if I had a son who would be even worse.

” I met my husband Phil in 2007 and knew the relationship becomes serious in about three or four months.

“A few years I felt that my biological clock is stopped, so we had the conversation about children and that’s when I said I had a 50/50 chance of passing the CMT gene.

“in my very bad days, when I was in bed with pain and spasms due to the CMT, I thought it was not going to have a child because he was afraid to pass it, but I really wanted to be parents and knew that he would do good, who would love them, they feel safe, instill good morals and values ​​and help lead a happy life.

Alison Leach CMTUK

Alison Leach and his daughter

“We find a . genetic counselor who ran despite the family history on both sides and confirmed that it could happen that in there were many days when I would be chatting with Phil and then start mourn suddenly thinking ‘what are we doing’ – it was emotional process -. as a duet with CMT, have hammer toes, high arches, numbness of limbs, muscle spasms in the back and hands and I get very tired

“We welcomed our beautiful Arya daughter at work in 2014 and although we have prepared for the worst, it has been tested and has no CMT “

” Discover the good news was the best day of my life.; I called my family in Australia and I felt like drafting the letter. “

Woman opening drink CMTUK

Despite the opening of a drink can be a challenge for some people with the condition

a movie has been released, supported by the expert in the CMT and the president of the Association of British Neurologists, professor Mary Reilly and charity CMT UK in an attempt to increase awareness of the disease and help those who might be suffering in their own

film, the idea that came from Douglas Sager, 67, who discovered he had CMT in 2011 -. has people of different ages and at different stages of the disease

Douglas said. ” I was dancing two or three times a week so he was surprised to be diagnosed much later life; while it took a few months of references, I see myself as very lucky because it can take a few years for people discover they have CMT.

Man in park CMTUK

The condition can be extremely painful

” I decided to retire and pursue my passion for film making in order to spread awareness of this condition, so that people who have it can get diagnosed earlier and receive the support they need. “

while CMT is currently incurable, early, accurate diagnosis can improve the lives of people with the condition can be managed more efficiently.

Charcot-Marie-Tooth is the name of the three scientists who discovered it. Constantly progressive, causing muscle weakness in the lower extremities. hands, leading to problems like hammertoes, restricted mobility, uncontrollable pain and perform tasks need to thin, such as fixing the shoelaces

motor skills

chief operating officer of the CMT UK, Karen butcher said: “Douglas raised funds for this film his own back and we are delighted with the end result, which is compelling, human and informative

.

Video CMT

the video has been produced in an attempt to raise awareness of

“is a lot to tell people about the CMT but this captures the bones of it too.

Professor Ramos, who supports the campaign are aware of the condition, he said: “CMT has many different features, but usually there is a loss of muscle mass and tactile sensation, especially in the feet and legs, but also on the hands and arms in the advanced stages of the disease.

“This leads to a series of orthopedic complications, leading to a variety of mobility and dexterity problems, and sometimes scoliosis.

“CMT does not describe a single disorder, but a group of diseases. It is important to determine exactly what type of CMT someone has, to improve their quality of life and this can only be done once considered a diagnosis in a patient.

the film was written, produced and directed by award-winning filmmaker and director, Tim partridge

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