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Nov 14 2016
by Alyssa Lam

What Having Osteogenesis Imperfecta Is Really Like

By Alyssa Lam - Nov 14 2016
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"I was born with glass bones and paper skin. Every morning I break my legs, and every afternoon I break my arms. At night I lie awake in agony until my heart attacks put me to sleep." — The Chocolate Con Artist from Spongebob
spongeboboverdose.tumblr.com

For those of you who have seen this episode of Spongebob, it is clear that this con artist was clearly faking these symptoms, but did you know this is not all too far-fetched?

I have osteogenesis imperfecta (also known as OI), a condition that causes possible hearing loss, easy bruising, short stature, physical deformities and, most of all, fragile bones. It was something I was born with, but was not diagnosed with until I was three and broke my tibia for the first time. My parents were never expecting it. They had never even heard of this condition before they had me. It only affects roughly 25,000-50,000 people in the entire United States. OI is genetic, but sometimes, like in my case, it was random. No one in my family had it before me but now I have a 50 percent chance of passing it on to my future kids even if my future husband does not have it himself. Everyone with OI has a different story and below is mine, along with bits of other stories from others living with OI that I had the opportunity to talk to.

"I'm Peter. I'm 60 years old. I have OI Type I. My four grown kids have OI Type I and we suspect my two year old granddaughter has OI. We are waiting for the results of her test. She has fractured one arm and one leg so far, all the past year." — Peter E. Coppa

When children come in with multiple fractures, sometimes doctors even mistake it for child abuse. Some believe it is a calcium deficiency, and it is not.

"When I was little my mother was looked at for child abuse. So thankful for Dr. Michael Callopy for noticing my sister and my blue whites around our eyes." — Debra Heiden Prange
"This isn't a calcium deficiency, so feeding my child cheese isn't going to cure her!" — Ashley Snider
"I am 41 and have Type I OI, two kids with no issues and have had 50 breaks. Growing up everyone said to drink more milk. I grew up on [a] dairy farm and drank milk unpasteurized and very whole; OI is not a calcium issue." — Jeremy Pohl

In the years following my diagnosis, I would go through at least five more fractures in my legs (I lost track after a while) and other skeletal injuries like stress fractures or compression fractures in my spine, severely sprained muscles, and others. Most of the time, it was simply because I tripped, slipped or moved a weird way.

And despite it all, I consider myself lucky. OI has eight known types and I have the less severe type, Type I. OI affects everyone differently. There are those unlike me who unfortunately cannot walk. There are babies who do not make it past birth. There are those who wake up to broken bones on a normal basis. And then there are those who like me, who can get away with appearing, to some extent, just like everyone else who is unaffected by OI.

"I am 29, Type I from the Phillipines. I had my first break at the age of three. My mom told me not to do anything except to sit and stand. Of course, I did not follow it. I danced secretly at school, joined school activities and even became a cheerleader and table tennis varsity player. I got all of my 11 breaks by accident (not at practice). When my mom and doctor found out I was super active at school, my doctor told me it was the reason my bones got stronger and safer because my muscles got leaner. I got pregnant at 18 and all I thought was, 'Please make my son healthy.' Now I'm a single mom with a healthy 11-year-old kid." — Marian Karen Asistio

In elementary school up to my freshman year of high school, I used a handicap device such as a wheelchair or a walker to get around. I always knew I was different, but back then I never realized how different I actually was from my peers' perspectives. As I got older, I felt more and more uncomfortable with my disorder. I couldn't do sports and participate in physical activities like everyone else could and it did not help that I was, and still am, so clumsy.

At one point, in middle school, when all anyone wants is to fit in, there were people who saw me only for my disability, jumping to the assumption that it also affects me mentally, which is very false. I clearly remember that a student in my class called me "handicapped," and another who thought that all of the students who rode the elevator were "retarded." I never saw myself that way, but the idea that others did got to me more than I should have let it.

I went to high school without any visible accommodations for my disorder. For all everyone else knew, I was just another student. And while this may have had good intentions, in ways it made me begin to feel like OI was something I should hide in order to assimilate among other teens. And when I went to write about OI in my college essay, I could not successfully do so until I let myself reflect. 

All of my life, people have told me that I've been so brave and how strong I was to never let the emotions get to me, but bottling up my emotions hurt more than help. Coming to terms with everything I've been through was something that did not happen right away, and did not happen until after I improved physically.

"The hardest thing about this disease is now that I'm a parent watching my kids go through all their breaks. Two of our three kids have OI (Type I). I have it and my mum and two brothers and their mum, etc. Our son broke his tibia and fibia (nasty compound fractures) in February. He had surgery when he broke and also about eight weeks ago when they removed the plate and screws they put in. One week later while on crutches he rebroke both bones (compound again) and of course had more surgery. He'd always dealt well with previous breaks but this one got to him. For the next week or so he kept saying he 'hated his life.' Definitely the hardest thing I've had to deal with. Much harder than my own fractures. So, in short, it's taught me the mental scars last longer and are harder to deal with than the physical." — Mike Nelson

Thanks to new medical advancements and technology, even though there is no cure, treatments have given me the chance to achieve stronger bones and, in turn, have helped me with how I see myself. I will never again feel ashamed with my OI and rather — because I no longer use handicap devices and feel a sense of empowerment from my struggles growing up — I feel even more obligated to share my story. In a way, I almost wish people asked me about it.

"I am 31, Type I. I went 25 years and many broken bones before I was even diagnosed. Once I was diagnosed, I was already pregnant with my third child (the first two did not have OI) who turned out to have OI, as well. It was then I realized how great my hearing loss was — I just thought it was from being a rebellious teen listening to loud music — and I went to get my first set of hearing aids. They have greatly improved my quality of life. I recently found out the bones in my back are degenerating at an alarming rate. I thought it would come later in life but you have to deal with the hits as they come I suppose." — Vanessa Tipton

In college, there are days I feel too stiff to walk normally and will have a slight limp. There are days where I feel strong enough to run short laps at the gym. Being at such a large school where no one really knows this part of me, OI has been invisible to everyone I've met. It's been nonetheless an interesting experience.

I know that I am more than just OI but it's something that was, and still is, a huge part of my life even though I’m improving. I look back and remind myself that, if it wasn't for my struggles, I may have not had the friends I do now and I may have not picked up interests in activities that do not require intense physical activity like playing piano, drawing, cooking, etc. OI has also been a big contributor to how I now carry myself as a person, as I strive to be confident and a leader in my daily life. If it was not for OI, maybe I would not even think to go for pre-med so that someday I can become a physician, like the doctors who have helped me in my past. Without OI, I would never truly understand the difficulties people with physical disabilities face.

"I have Type III (severe). I am 46, a wife and a mother to two children, one with OI, also. Living with OI, you learn your true strength…learning to not just live with this disorder, but to thrive. I have met many people with this and you can see that they just get by or resent having it. I can honestly tell you I would not change anything. Even the pain of over 300+ breaks and the 17 rod surgeries and countless months in the hospital…I still love my life." — Tammy Taylor
"I am 48 and have Type III. I have come to embrace OI. It is part of who I am. I met my soul mate and husband who also has OI and we found and adopted our son on the other side of the world because he too has OI. If not for OI, I would never have known two of the most important people in my life, as well as many lifelong friends who also have OI." — Tracy Johnson Mulroy

One of the things I do emphasize now as well, especially since I am doing well, is the need to raise awareness. The symbol for OI is a wishbone, and on May sixth of every year is National Wishbone/OI Awareness Day, where in order to raise awareness, people are asked to wear the color yellow. Though this has greatly improved efforts to bring OI to light, because it is so rare, not many people know much about it yet and the informative resources about OI are not all that available. While there has been research put into finding a cure, there is still much more that is needed to achieve that goal. Behind all of the scientific bases of OI, there is a large community worldwide in need of not only physical aide, but financial and emotional support. I do not write this to speak on mainly my own behalf, but for those who truly need this.

"Yes, our bones actually break that easy. Please stop questioning me about why my son has another broken bone. My son goes into a depression every time he breaks. And his dad always blames me for his breaks because I gave OI to him." — Anonymous
Last year's date via oif.org

With any physical disability, apparent or not, keep an open mind. If you have OI like I do, or another physical disability, know that while it may be difficult now, keep on going. We never asked for this body of ours but I like to think that this is what was granted to me because I was up for the challenge. It's a part of what made me the strong young woman I am today and continues to do so for many people. 

It can be easy to dwell on your hardships but you will never get anywhere if you believe you are nothing other than your disability. Talk to people when you're ready to share your story. Learn to laugh about it every once in a while (like how I do with that Spongebob reference) and love yourself for all that you are. Forget the ones who have made you feel inadequate — you are much more than what they think of you as — and work to prove them wrong.

Likewise, if you do not suffer from OI or a similar disability, know that the human race is not just varied with a mixture of people of all shapes, sizes, skin colors, beliefs, cultures, likes and dislikes, but also when it comes to health conditions. Be understanding — listen to what we have to say, but don't pity us. Be aware that it is real and can affect anyone. We all have attributes that make up who we are and we are capable of great things. Encourage those around you, and be accepting. Strive to learn and understand. We must not forget the rights that those with disabilities have, and the integral part that people with disabilities have in society.

"OI isn't always something that is passed down from your parents. My husband or I have no history of it in our families. It can randomly happen to any couple, healthy, unhealthy, young or old. OI can affect all races. Most people with OI are considered to have a form of dwarfism. My daughter was noticed in utero at 18 weeks to have all of her long bones (arms and legs) fractured, her rib cage was very small and fractured, so her organs very small. Her skull was fractured as well. The doctors all told me to abort her, she would have no quality of life and her lungs and organs were too small to sustain life. Even after not listening to them, she came out fighting. If I could say anything to doctors about OI is everything underestimate a person with it. Give everyone an equal chance. Here is our miracle Aurora." — Nichole Richard Lewis
Nichole Richard Lewis via Facebook
"Creo que cada persona merece un espacio en tu articulo, todos podriamos contar un sinfin de experiencias por desconocimiento del tema por partes de la sociedad, esto no es falta de calcio, es de información. Soy Jonathan. Tengo 29 años. 6 lesiones y soy Tipo I." —Jonathan Ortiz Rosales

Translation: "I think that every person deserves a space in your article. All we count on are an endless stream of experiences through the ignorance of the topic in society. This is not a lack of calcium, it's information. I'm Jonathan. I am 29 years old. Six injuries and I am Type I." — Jonathan Ortiz Rosales

"I'm 48 in Maine with Type I. My biggest struggles now are with sore joints and back and hearing. I wear hearing aids but still struggle in my job, also with loud ringing, but I also know how lucky I am to be walking and functioning holding down a job. As you know with Type I, we break a lot as children and it phases out some with more joint, tendon, ligament problems as I'm getting older...I've read we can re-break like we did as children with menopause, which makes me so nervous as I'm nearing 50! My first fractures were vertebrae at age four and then six, but the first time I tried to stand at nine months, I broke my femur and was in a body cast so didn't walk for a very long time. My parents were young parents and there were three of us. One always with a broken bone. At age one and two, they were threatening to take us thinking abuse until one doctor had a suspicion and put us in hospital and did testing, also to find out my dad had it but had no clue through his life. I have asthma and am short-waisted which makes it hard to breathe sometimes, can't eat too much at once, and went to have LASIK eye surgery, but was told I wasn't a candidate cause my corneas are too thin (that's right our eyes are collagen too). So we are a little defective, we are unique... living in Maine with winter coming, I almost have PTSD at the thought of ice, walking and fracturing! We both know one fall/break can change your life for a very time. I had one biological son who gratefully did not get it so I counted my blessings and adopted my second child, who just made me a full time grandmother." — Brenda Hines

While our bones may break easily, our spirits never will. Together the OI community will always exemplify strength and dignity, no matter what the circumstances may be.

Lead Image Credit: Asja Boros via Flickr Creative Commons

Editors Note: Some quotes have been edited for clarity.
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Alyssa Lam - Northeastern University

Alyssa Lam is a freshman at Northeastern University and one of Fresh U Northeastern's Junior Editor-in-Chiefs. She is undeclared; however she has interests in following a pre-medical track. In her free time, Alyssa likes to cook, work out, draw, write, hang out with friends, explore, and try new things. She prides herself on the fact she is short yet fierce. Find her on Instagram @lyssalam6.

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