Hi Im Lynsie, I have a rare bone disease...please visit my blog =)

Discussion in 'Spirituality/Worship' started by Lynsie, Jun 9, 2010.

  1. Lynsie

    Lynsie New Member

    Hi My name is Lynsie,
    I love Jesus with all my heart. I have a rare bone disease called Osteopetrosis, not to be confused with the very common osteoperosis. I have a created a blog to explain all about the disease and to share my story and how I life with Osteopetrosis each and everyday. And how I have to literally rely on God as my physical strength constantly.

    My goal is to educate people about Osteopetrosis and its severity. To raise awareness of this disease and how seriously life altering and emotionally shattering it can be. Around almost every corner there are awareness ads, magazines, fliers, and commercials for diseases such as breast cancer, cervical cancer, osteoporosis, diabetes, etc., and while those are extremely serious, and some even deadly, diseases, Osteopetrosis should not be overlooked. My Doctor once told me that scientists could very well find a treatment or a cure for Osteopetrosis, but that there are just not enough people who know about it to fund its research. By writing this blog, and sharing my testimony, I can do my part in raising awareness, in hope that one day scientists may have the motivation to find a treatment or a cure. Please join me in raising the awareness for Osteopetrosis. And maybe one day we can find a cure.

    Please visit my blog at: http://lynsies-story.blogspot.com/

    Please share this with everyone you know. Please leave comments on my blog, ask questions, and even offer advice =)

    Thank you so much and God bless
  2. Doznclan3

    Doznclan3 New Member

    You are doing a great thing in getting social awareness out there for this disease.
    It also sounds like you have a wonderful companionship with the Lord. He will help you get the awareness out there. I know. I went through the same thing back in the 80's when it seemed no one was paying attention to what Spina Bifida was..we are not talking about just Spina Bifida that only includes the spine, but Spina Bifida with Mylo...includes the spinal cord, which is usually protruding through an open part of the back, along the spine.
    I was actually a part of a study back in the 80's after I had my son born with it. He is paralyzed from the waist down, now in a chair. He's doing well, one of the 10% that did not need the shunt for spinal fluid build up on the brain. But, having said that, there are a lot of very smart folks out there with a shunt, because it works. It keeps the brain from swelling with fluid.
    Anyway, when I was ready to try for another baby again, I would send my blood to the state of Washington, for them to test..then I would receive free prenatal vitamins from them...it included..what you have heard by now..a lot of Folic Acid in it. I was to take it for three months before I even tried to get pregnant..then keep taking it. It took me 6 months to get pregnant. My son was fine..I sent a note to Washington to let them know. After 5 years..the conclusion...folic acid is very important..and this birth defect is partly genetic..but mostly, folic acid is important. Eat those leafy green veggies!
    I had the local newspaper do an article on Spina Bifida..my son got his cute little mug in the paper. They wanted to do follow ups on him. He was the poster boy in Salt Lake City one year..I was in charge of a large family get together that included families from all over the state. Not bragging, but oh how I wish I still had all of that energy. Finally, a real big thing happened. Our Governor proclaimed the month of Oct..Spina Bifida month in Utah. After that, I made sure that was put in the paper! He's 28 years old now. We say that he was a guinea pig for sure back then. Had a lot of surgeries that were done for the first time. Some worked, some didn't. He was truly one of the pioneers of "The Number One Birth Defect" in our country, but other birth defects were better known. So, sounds like you are going through a very similar thing. Go for it. Go to the newspaper. Get involved with what you can, when you can, as you are the one in pain, it will be more difficult I'm sure. Bless your heart for creating the blog. This will be a great opportunity for others to learn more of the illness.
    I am going to read your blog now, and I will learn something new today. Thank you so much.
    Love to you, God Bless you, Cynthia
  3. Lynsie

    Lynsie New Member

    Oh Cynthia, it blesses my heart to read your comment. I have great empathy for you and your son. I actually am familiar with the dangers of Spina bifida, my husband has it, although not nearly as severe. Although it has presented problems for him in the past. God is definitaly keep watch over him, so far nothing bad has happend since. I will pray for you and your son. Physical trials are not easy. My heart goes out to you. Thank you so much for responding on here and on my blog, it blesses my heart so much. I am so excited to see God already working through my blog in such a short time. I can see big things happening.

    Thank you so much for your interest and your kind words,

    you can also subscribe to my blog so you will be notified when I write anything new =)