Social Media

Sunday 12 April 2015

Living with FOP - Fibrodysplasia Ossificans Progressiva

What is Fop? One of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.

Living with FOP has got so much easier as I have grown up, my teenage years were dreadful, thinking I was an normal teenager when really I wasn't, it was extremely hard. It wasn't just hard on me it was hard on my whole family, as if one child with this horrendous disease wasn't bad enough my twin sister also has it.

My first big flare up happened when I broke my arm when I was five years old, I was chasing my big sister around the living room and i fell of the sofa, my arm locked in the bent position, at this stage my parents and our Doctors had no clue what was wrong.


My second flare up was when I broke my leg in six places * I know, I know how to do it right* thats when my leg locked at the hip, I was only 11 and it was hard to come to terms with I didn't deal with it the best at that time. After that I didn't have many major flare ups, a few on my back and my neck & jaw but nothing life changing.

Until three years ago I had it pretty good until my good arm started flaring, it was so swollen, the pain was excruciating then it locked, I never thought i would get over this I was very down wouldn't say depressed but i found it very difficult to deal with, I got very frustrated with the people around me having to feed me every bite to eat, I missed just stuffing my face with crisps how ever many i wanted at that time or eating a whole apple, the simple things in life I once took for granted. In the middle of all this I got married, Mike my absolute rock whom I thank for so much, He helped me through a very tough time, he got the brunt of all my frustration's, i taught him how to do my make up and hair and he had the patience of a saint even with me shouting at him and so many crying hissy fits.

We then came up with the idea to make my make up brushes longer, at the start it was hard as I didn't have the arm reach * if that makes sense* to get really precise especially with eye make up, foundation was okay. :) I feel like I have got it mastered for now but I could always do better.

Life every day is hard I'm not going to lie, sometimes I do want to stay in bed and not get up but I have three beautiful dogs who help me through the day when my husband is at work, I have taught my self to be able to get dressed again, before I couldn't even pull my jeans up or do anything for my self, i have mastered getting my bra on, tshirt and jeans woohoo, sounds so silly but means everything to me to have that independence again. I tell my self everyday things could be worse? I could be worse. Im not scared anymore because I know I could adapt if I lost more of my mobility, obviously it scares me but its not world ending scary anymore! Im a very determined person and if I want something and i can't do it il find a way to do it.

Lucy and I are one of three sets of twins in the whole world, I think that makes us pretty special.

Fop has made me want to live life to full and appreciate every moment, I could wake up the one morning and my whole life could be changed.  I have met the bestest people through our little community, we all have each other!

Sorry about the horrid picture but I wanted to show you what it looks like to have extra bone grow like a second skeleton; 










Share:

No comments

Post a Comment

© A little bit of life | All rights reserved.
Blogger Template Crafted by pipdig