Are you a Generous Mind?

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Sunday, November 25, 2012

A Diagnosis Leads to Generosity

Guest Blogger Bio: Melissa Danley is a 25-year-old Communications student with emphasis in Public Relations. She’s blessed with a beautiful life of wonderful family and friends and an eccentric little dachshund.

My name is Melissa and 10 years ago I was diagnosed with a degenerative bone disease in my jaw called Idiopathic Condylar Reabsorption. This rare disease basically kills your condyle joints (the part that holds your jaw together) and they slowly disintegrate. This causes the bottom jaw to deform and shift over time. The good news is that eventually the joints stop dying and there is a corrective surgery that can fix it. For me, this took 10 years. Over the 10 years my body tried to compensate and muscles in my neck shifted around causing terrible neck pain and headaches. My jaw had receded so extremely that it closed off my airway by 90% causing sleep apnea, memory loss, trouble concentrating and regular migraines. This was some serious stuff!

At my initial diagnoses there was very little research and understanding on this disease because it was so incredibly rare. We had no idea what to do. I am so thankful that it took 10 years to finally get my corrective surgery. Over that time there has been such a growth in the research, different surgeries and techniques used to fix it. On top of that, over that time I actually was able to find other people who have the same disease! It was such a blessing to be able to talk to them. Those who had already had the surgery were able to give me information and tips on recovery and those who hadn’t had the surgery yet really connected with me.

Even though I now had a "cyber support group," there was still little-to-no information out there that I could really understand. I could read the medical articles or chat with different people about their experience but I wanted to actually see the process. So I decided to start a video blog that documented in real time my entire experience. (See my video blog here.)

I began one year prior as I prepared for the surgery and continued to make videos through out my surgery and very long recovery. I showed everything. My insecurities, blood, tears, frustrations and triumphs were all out on the Internet for everyone to see. I didn’t spare a single detail or embarrassing bit of information. I was incredibly vulnerable. But the incredible thing was the amazing response I received.

People from all over the world with this disease began writing me and telling me how much my videos had helped and encouraged them. And then people without this disease began to do the same thing! It was amazing! I was able to answer questions and even refer people to different surgeons. God took what I thought was a simple idea and turned it into a tool that really helped people. Now there is not only information about this disease, but people can actually watch as someone goes through the process of fixing it. And this is all because of God, not me! God walked beside me through the entire agonizing and psychologically challenging experience and I am forever grateful. God is so good. 

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