Discovering the Bumpy Bone Club

October 26, 2015

 

 

I am a “rare genetic mutation” case of Multiple Hereditary Exostoses, meaning nobody else in my family has MHE. I just lucked out, I guess. Growing up in the country, in a rural area, I didn’t encounter anybody with my condition. Nobody understood what it was like to have bumps and pains the way I did. I often hid my condition because my peers couldn’t fully comprehend it. A lot of them thought they would “catch” this disorder from me.

 

To put it simply: I had nobody I could talk to about this disorder who actually understood it. There was nobody I could talk to who got the insecurities, the anxieties, and the fear that came with it. The research my parents did do didn’t cover that side of things, and when you have a chronic pain disorder – that side of things is very vast.

 

When I was roughly eleven years old (maybe; it’s quite hard to remember the exact age I was. I used to think I’d be able to recall every major milestone in my life with perfect clarity, but that isn’t so), I went to our family doctor’s with my mom and sisters for a routine check-up and to get a flu shot. After the last needle was injected in the last unwilling participants arm, our doctor told my mom he had something important he wanted to talk to her about. He said this while his eyes briefly darted over to me.

 

Dr. B had been our family doctor for years. While other doctors shrugged off my parents very early concerns about my body and my milestones, Dr. B saw what they saw: something wasn’t quite right. He didn’t know what, but he knew the bumps appearing on my shoulders and legs were not within the “normal” range. He pushed for a referral to Sick Kids Hospital, where I started seeing an orthopedic surgeon who diagnosed me with Multiple Hereditary Exostoses, or as I knew it: Bumpy Bones.

 

My mother sent my sisters and I out of the examination room to wait in the waiting room. It felt like their conversation was taking forever, so I crept back down the hallway and stood outside the door. I could hear key words from their conversation. Support group. Bumpy Bones Club. Based in the US, but it might be beneficial for me to talk to someone who knows what it’s like.

 

I honestly thought I was the only person in the world with this disorder. How could I not think that? None of my family or friends had it. Nobody we knew had it. This was before the age of electronics, before the knowledge of the Internet and how easy it was to search online. I thought I’d be alone forever, and hearing that there were people out there who actually knew what it felt like was so…immense.

 

I asked my mom about it in the car, but she shot me down. I guess she wanted to research the support group beforehand, and talk to my dad about it.

 

I’m not sure how many days or months went by before my mom brought up the subject of the support group again, but I remember walking into the family room and catching her on the computer. Her eyes were shining with unshed tears and she motioned for me to come over.  She showed me a webpage and told me that “there are other people living with this disorder too, and this support group will let you talk to them. I’ve been talking to Susan, and she says you can write your story for the Bumpy Bones Club.”   

 

So, I did that. I sat down with my mom and I wrote out my story – I wrote about how I was the only one in my large family with MHE. I wrote about the surgeries I’d had and how it’s sometimes difficult feeling alone in the world. She created a special email account for the both of us and we logged in a few times to the Bumpy Bone chat online. Alas, those were the days of AOL dialup connections, and it wasn’t exactly easy to participate in the chats. But I did read, I read all the stories of the other Bumpy Bone Club kids, and I started to feel less alone. Just knowing there are other people out there like me…that gave me strength.

 

One day, during the summer between grade seven and eight when I was recovering from yet another surgery, I got an AOL message from someone. She said her name was Mandy, that she was my age and that she had MHE too. She lived in the states, and I think she was recovering from an operation as well. We spent hours talking to each other about everything from our mutual fear of crowds and being stared at, to how many surgeries we had, to how it felt to be a teen with this disorder.

 

We had an instant connection, and I remember feeling so relieved that there were people out there who got it – that there was someone exactly my age who understood all of the feelings. Mandy and I often didn’t even have to say what we were thinking, or explain how we were feeling because we just got it.

 

Meeting Mandy, Nicole, Susan, Emmon and all the others made me feel less alone. Less isolated. I was able to talk about my problems and fears and feel totally accepted and understood.  It was like I had my own personal army within the computer, an army of people who got it.

 

I am so thankful for the Bumpy Bone Club. I honestly don’t know if I would be the person I am today if I’d never found it, if I never made friendships and connections with other people living with this disorder. I feel like the Bumpy Bone Club saved me from a world of angst and isolation.

 

I’m excited and happy that my kids will always know this group. I am hopeful that they may never feel isolated and completely alone in their battles with this chronic pain disorder. Not only do they have me, but they’ll know and be able to talk to many other kids with this disorder as well.

 

Support groups are priceless in the medical community. You can take pain killers to dull the pain, you can have educated doctors know your physical symptoms inside out – but having other humans know your emotions, and your heart…that’s completely irreplaceable, and to me…it’s the best kind of medicine out there. That’s what gives you the strength to continuing moving forward, even when things feel impossible.Discovering the Bumpy Bone Club by J.C. Hannigan I am a “rare genetic mutation” case of Multiple Hereditary Exostoses, meaning nobody else in my family has MHE. I just lucked out, I guess. Growing up in the country, in a rural area, I didn’t encounter anybody with my condition. Nobody understood what it was like to have bumps and pains the way I did. I often hid my condition because my peers couldn’t fully comprehend it. A lot of them thought they would “catch” this disorder from me. To put it simply: I had nobody I could talk to about this disorder who actually understood it. There was nobody I could talk to who got the insecurities, the anxieties, and the fear that came with it. The research my parents did do didn’t cover that side of things, and when you have a chronic pain disorder – that side of things is very vast. When I was roughly eleven years old (maybe; it’s quite hard to remember the exact age I was. I used to think I’d be able to recall every major milestone in my life with perfect clarity, but that isn’t so), I went to our family doctor’s with my mom and sisters for a routine check-up and to get a flu shot. After the last needle was injected in the last unwilling participants arm, our doctor told my mom he had something important he wanted to talk to her about. He said this while his eyes briefly darted over to me. Dr. B had been our family doctor for years. While other doctors shrugged off my parents very early concerns about my body and my milestones, Dr. B saw what they saw: something wasn’t quite right. He didn’t know what, but he knew the bumps appearing on my shoulders and legs were not within the “normal” range. He pushed for a referral to Sick Kids Hospital, where I started seeing an orthopedic surgeon who diagnosed me with Multiple Hereditary Exostoses, or as I knew it: Bumpy Bones. My mother sent my sisters and I out of the examination room to wait in the waiting room. It felt like their conversation was taking forever, so I crept back down the hallway and stood outside the door. I could hear key words from their conversation. Support group. Bumpy Bones Club. Based in the US, but it might be beneficial for me to talk to someone who knows what it’s like. I honestly thought I was the only person in the world with this disorder. How could I not think that? None of my family or friends had it. Nobody we knew had it. This was before the age of electronics, before the knowledge of the Internet and how easy it was to search online. I thought I’d be alone forever, and hearing that there were people out there who actually knew what it felt like was so…immense. I asked my mom about it in the car, but she shot me down. I guess she wanted to research the support group beforehand, and talk to my dad about it. I’m not sure how many days or months went by before my mom brought up the subject of the support group again, but I remember walking into the family room and catching her on the computer. Her eyes were shining with unshed tears and she motioned for me to come over. She showed me a webpage and told me that “there are other people living with this disorder too, and this support group will let you talk to them. I’ve been talking to Susan, and she says you can write your story for the Bumpy Bones Club.” So, I did that. I sat down with my mom and I wrote out my story – I wrote about how I was the only one in my large family with MHE. I wrote about the surgeries I’d had and how it’s sometimes difficult feeling alone in the world. She created a special email account for the both of us and we logged in a few times to the Bumpy Bone chat online. Alas, those were the days of AOL dialup connections, and it wasn’t exactly easy to participate in the chats. But I did read, I read all the stories of the other Bumpy Bone Club kids, and I started to feel less alone. Just knowing there are other people out there like me…that gave me strength. One day, during the summer between grade seven and eight when I was recovering from yet another surgery, I got an AOL message from someone. She said her name was Mandy, that she was my age and that she had MHE too. She lived in the states, and I think she was recovering from an operation as well. We spent hours talking to each other about everything from our mutual fear of crowds and being stared at, to how many surgeries we had, to how it felt to be a teen with this disorder. We had an instant connection, and I remember feeling so relieved that there were people out there who got it – that there was someone exactly my age who understood all of the feelings. Mandy and I often didn’t even have to say what we were thinking, or explain how we were feeling because we just got it. Meeting Mandy, Nicole, Susan, Emmon and all the others made me feel less alone. Less isolated. I was able to talk about my problems and fears and feel totally accepted and understood. It was like I had my own personal army within the computer, an army of people who got it. I am so thankful for the Bumpy Bone Club. I honestly don’t know if I would be the person I am today if I’d never found it, if I never made friendships and connections with other people living with this disorder. I feel like the Bumpy Bone Club saved me from a world of angst and isolation. I’m excited and happy that my kids will always know this group. I am hopeful that they may never feel isolated and completely alone in their battles with this chronic pain disorder. Not only do they have me, but they’ll know and be able to talk to many other kids with this disorder as well. Support groups are priceless in the medical community. You can take pain killers to dull the pain, you can have educated doctors know your physical symptoms inside out – but having other humans know your emotions, and your heart…that’s completely irreplaceable, and to me…it’s the best kind of medicine out there. That’s what gives you the strength to continuing moving forward, even when things feel impossible.

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