Living with a physical disability, whether recently developed or since birth is a daily battle. For me especially everyday tasks take more effort and concentration, some tasks are completely impossible. On this blog post I’m going to be showing you all what makes my days that bit easier, with the things i have bought to help me do the things people take for granted daily.
My life saver when there is no one about to help me put my socks on. It takes me twice as long to put them on, but i can still do it with this aid.
Patience is key
The most important thing is to be patient. It can take a long time to come to terms with the things you cannot do. I have had FOP since birth and I am now 26. I still haven’t got my head around some things. I shout and cry with frustration over not being able to take my socks off or do my own hair the way i want it. It is about having faith that things will improve, even if it is one step at a time. It is important that you stay patient with yourself and others when everyday tasks seem much harder. I have to give my parents and Michael a little credit where its due, I am thankful for the things they do on a daily basis for me. The way they put up with me shouting for things that are out of their control and out of mine. It’s just hard not being able to do ‘Normal’ things.
Head scratcher / Hair brush
Without these everyone around me would be demented with me asking all the time to scratch my head, scratch my leg or back. With my arms fused to by my sides, and my hips and back fused into one position I find it hard to reach places. When I’am itchy, it is the worst feeling not being able to reach. These are a few pounds each and a life saver.
Most people will look at this and automatically think oh its a litter picker to pick up litter outside. Well you aren’t wrong, but i use it for something completely different. I use it to put things in to the washing machine, as i can’t bend down to put the washing into the washing machine, I then use it to remove the clothes from the machine. I use it to help me reach things from the high shelf in the fridge, I lift Gulliver’s food bowl off the floor when no one is around to help me.
To be honest i love having that little independence and I will try and keep it for as long as possible. I don’t know when FOP is going to become aggressive again, so i need to just live life to the full every single day.
What is FOP?
I know most people that follow my blog already know what FOP is, but for those who don’t.
Fibrodysplasia Ossificans Progressiva is one of the rarest and most disabling genetic conditions known to medicine, causing bone to form in muscles and other connective tissues such as tendons and ligaments. Bridges of extra bone develop, in many cases, across the joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone.
There are no other known examples in medicine where one normal organ system turns into another.
Most cases of FOP are new. This means that no-one else in the family has FOP. This happens because unexpected changes (mutations) happen as the genes are passed along from each parent. Many of these changes, such as the change that leads to FOP, are accidents of nature that happen for no apparent reason.
Children with FOP classically appear normal at birth, except for congenital malformation of the great toes. However, some rarer atypical cases may not display such malformation.
During the first or second decade of life, painful swellings that may look like tumours develop over the neck, back and shoulders and mature into bone.
- FOP is one of the rarest and most disabling genetic conditions known to medicine.
- FOP causes bone to form in muscles, tendons and ligaments.
- FOP bone formations progressively restrict movement of sufferers forming a second skeleton that imprisons the body in bone.
- FOP sufferers classically appear normal at birth except for congenital malformation of the big toes.
- FOP progression is variable and unpredictable. One day a person may be able to turn their head or move their arms, the next they become frozen forever in a locked position.
- FOP affects 1 in 2 million people. There are just over 700 confirmed cases worldwide, 40 in the UK.
- FOP research will not only help to find a cure but also other more common bone-related conditions will benefit from discoveries made (fractures, osteoporosis, hip replacement and other forms of heterotopic ossification that occur in trauma and burn victims).
- FOP does not affect a person’s intelligence.
- FOP can significantly shorten the life expectancy of sufferers (average life expectancy is about 40 years).
An example of the typical progression of FOP
Spontaneous flare-ups of the disease arise in defined temporal and spatial patterns, resulting in ribbons and sheets of bone that fuse the joints of the axial and appendicular skeleton, entombing a patient in a skeleton of heterotopic bone.
How would understanding the cause of bone formation in FOP help others?
The information obtained from studying this disease will have far-reaching implications for the treatment of common disorders such as fractures, osteoporosis, hip replacement surgery and other forms of heterotopic ossification that occur in trauma and burn victims.
Demographics of FOP
Genetic disease affecting 1 in 2 million people
No ethnic, racial or religious patterns
700 confirmed cases across the globe
40 known cases in the United Kingdom and 285 in the United States
Clinical Characteristics of FOP
- Characteristic malformations of the great toes
- Flare-ups occur spontaneously or following bodily trauma such as: childhood immunizations, falls while playing, viral illnesses
- Misdiagnosed in a number of cases as cancer
- Surgery makes the condition worse
- There are no effective treatments currently.