1 in 100 000

The last time I think I broke my finger was nearly two years ago. I say I think because when the doctor looked at the X-Ray she said that there was not even enough bone in my finger to tell if I had broken it.

I am twenty years old and so far I have had three CT scans, two MRI’s, one bone scan and too many X-rays to count.

I have a condition called Multiple Enchondromatosis, more commonly known as Ollier Disease.

My disease means that I have numerous benign tumours of cartilage (the tissue found in your nose and ears) spread throughout certain areas of my body. These tumours mean that it is easier for me to break my bones. Additionally, I also have pain due to muscle displacement that has occurred as a result of my condition and struggle with pain during changes in the weather.

I am the most effected in my right humerus (the long bone in the upper arm). Some of the tumours located in my growth plate have caused my right arm to be shorter than my left by approximately 15 centimetres or so. My X-ray’s sort of look like my humerus is a banana with swiss cheese throughout it and it has a noticeable bend to it.  I am also impacted in both my left and right hands with my left index finger being a particular cause of trouble for me since my diagnosis, which is particularly tiresome since I am left handed.

The estimated prevalence of this nonhereditary disease is one in every one hundred thousand meaning that Ollier Disease is an exceptionally rare condition. Its occurrence is completely spontaneous.

The Diagnosis

I was diagnosed with Ollier Disease when I was nine years old. I was playing on the classroom floor when the door opened and closed over my hand. The most injured part of me was my left index finger. I remember that I was in a significant amount of pain. After leaving my finger for three days as it did not really look broken but rather bruised my parents took me to the doctor. After taking an X-ray the doctor told my parents that they needed to take me to the hospital as he had seen something on my X-ray that he did not understand. My parents were beside themselves, looking at the X-ray of my hand, there were ominous dark patches among the white bone, almost swiss-cheese like, to them it looked like chondrosarcoma- cancer of the bone.

My father took me to the hospital the next day and after nine hours in the emergency room the specialists finally had a diagnosis. They said that my finger had been fractured and even shattered in some places due to the fact that I had a bone condition which made my bones more susceptible to breakages. This moment altered my life- in the twenty or so appointments which followed in that year the specialists fixed my finger as well as they could.

I never let my diagnosis keep me down, the day after I received my initial cast for my finger all up my lower arm I went jumping on a trampoline! This resulted in me breaking my cast a day in to the two weeks I would have it!

Everyday Impacts

Something that accompanies my disease is the risk of the tumours becoming cancerous. Every time I feel an increase or a change in the type of pain I am feeling it sends shivers down my spine.

I have had moments where my condition has become especially frustrating:

  • Since my diagnosis I have been careful not to play any ball sports. Throughout school I had to sit out of school sports. The novelty soon wore off and it became disheartening watching my peers play without me. As even a knock could send me into large amounts of pain, my mother, a teacher at the school, often sat with me in her classroom during recess and lunch times. Now that I’ve reached university level, I sometimes now play ball sports but stop short of playing competitively.
  • I have experienced many instances where my disease has meant that completing my education has been a challenge. Just before my final exam for science in grade 10 I shut my finger in my locker hard and most likely broke it. I still sat my exam with tears running down my face as I didn’t want all my study to go to waste. I remember achieving a result that was over 90%!
  • I hurt my finger another time after this. My mother took me to the local GP for an X-ray and the doctor rather than telling me whether or not my finger was broken freaked out about my X-rays instead. As I tried to explain what my disease was and that we had known about it for a long time she did not seem to listen to a word I said. By the end of the appointment I was crying with frustration. I never did find out whether or not I had broken my finger.
  • My disease also made me the subject of high school taunts. My shoulder has always caused me a significant amount of pain when bumped so when I have trouble with it I use a sling to keep it stable and to make sure that I do not agitate it by moving it further. When I was in high school people used to mock me and imitate the way I would carry my arm to my chest. These days, when I have to I still use a sling, I feel very self conscious when I do, but the difference it makes to my pain levels is worth it
  • It used to frustrate me and still does to some extent that one of my sleeves is always longer and fits better than the other. When I look in the mirror I can see the difference very clearly between my arms. However, I have learnt over time that although I think others are noticing as well they really aren’t! Hardly anyone is that observant.

Despite these challenges, ultimately I would not have had it any other way. I would certainly not have been the same person without my disease. My condition is an important part of my testimony and has served to affirm my Christian faith.

Miracles From Within

God has worked miracles within me. When I was first diagnosed with my disease it was found in my left tibia (lower left leg). It did not cause me much trouble until I reached the age of sixteen. Walking on my leg became extremely painful and so I grew increasingly worried that the tumours in my leg had become cancerous. After seeing a specialist and expressing my concerns an X-ray was ordered.

We were baffled when we received the results- by some miracle the tumours in my leg were completely gone, there was only bone!

I am certain the pain I felt was the cartilage becoming bone.

Even with this miracle having happened, it did not take long for me to forget just how amazing this was and how beyond our understanding the God we serve is! A few years ago when I was in a significant amount of pain with my shoulder, somebody prayed over it. I remember that they prayed for the complete healing of my condition for healing. I scoffed at his prayer in my head thinking- as if- my disease is incurable! Later, upon thinking about the prayer again I realised how silly my thoughts had been! God had already got rid of the disease in an area of my body once, how outlandish was it to believe that He could do it again?

Somewhere else where I have seen God’s hand in my disease is in the support group for people with my condition which I run on Facebook. Currently, the group boasts nearly 600 members from all around the world! Members use it to look for support and to inspire one another. Each case of Ollier disease is unique and so participating in support group gives one the sensation that they are not alone in their condition. I see God moving constantly in the group through the supportive interactions members have.

The Thorn in my Flesh

I believe that God did not intend for me to have Ollier Disease. It is a direct impact of sin which has caused human genetics to progressively get worse and worse.

Although God did not intend for my condition to exist, I know that God can use it as my testimony. In the Bible it is recorded in 2 Corinthians 12:7 that Paul was given a “thorn” in the flesh. There has been much speculation as to what this thorn was, it may have been anything from some sort of chronic injury or perhaps an inclination towards a certain type of sin. Paul admits in verse 8 that he found this thorn difficult to deal with, pleading with the Lord for it to be taken away. To his pleading Paul says that God replied “My grace is sufficient for you, for My strength is made perfect in weakness.” God, despite illnesses and our conditions and even our past sins can make something beautiful out of our weaknesses. Paul then concludes:

“Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.”

Everybody on this planet has some sort of ‘thorn’, a weakness that although unintended by God, can be used in beautiful ways by Him. What is your thorn? Something from your past? Some sort of injury or condition? God is waiting to turn your weakness into strength if only you accept the call.

By Kira-leigh Josey

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