28 February 2013
Rare Disease Day
Did you know that today is Rare Disease Day. Most likely you didn't even know the day existed unless you, a loved one, or know someone who is effected by a rare disease.
What is Rare Disease Day? It is an international day to bring awareness to a rare diseases.
Many people regardless of age, gender, and race suffer with specific medical problems,trying to getting a proper diagnosis, and getting a much needed treatment.
The rarity of their conditions makes medical research more difficult for those suffering with a rare disease. A cure for something that you don't know much about is much more difficult.
In the U.S., any disease affecting fewer than 200,000 people is considered rare. If you would like to find out more or help you can go to the Rare Disease Day site.
Today Bug participated in the radio-thon for our local Children's Miracle Network. Listening to all the stories just brought tears to my eyes. I have never had her laying in the hospital being told my child could die. Amazingly these children defy the odds and surprise the medical community.
Bug may have her challenges and we may not have anyone else to compare Bug;s genetic deletion and health issues up against. Neither I or the doctors know what the future holds for her. Listening to others is a reminder of how thankful we should be for each and everyday.
Today was also a big reminder to me that children with special needs prove their doctors wrong all the time. Celebrate today's accomplishments and stop worrying so much. God is in control.
These kids are so determined, and the most happiest children around. For the most part they don't know that the life they live is not normal. What most people don't realize is it that these children don't want sympathy, nor do the parents want sympathy either. We want to be treated just like everyone else. You may have to be patient with us and have some compassion. Compassion and sympathy are two different things.
By the way Bug thinks that it is the norm for kids to spend hours a week in therapy, or going to the doctors all the time.
Have a blessed day. In your prayers today lift up all those who suffer from a rare disease.
What is Rare Disease Day? It is an international day to bring awareness to a rare diseases.
Many people regardless of age, gender, and race suffer with specific medical problems,trying to getting a proper diagnosis, and getting a much needed treatment.
The rarity of their conditions makes medical research more difficult for those suffering with a rare disease. A cure for something that you don't know much about is much more difficult.
In the U.S., any disease affecting fewer than 200,000 people is considered rare. If you would like to find out more or help you can go to the Rare Disease Day site.
Today Bug participated in the radio-thon for our local Children's Miracle Network. Listening to all the stories just brought tears to my eyes. I have never had her laying in the hospital being told my child could die. Amazingly these children defy the odds and surprise the medical community.
Bug may have her challenges and we may not have anyone else to compare Bug;s genetic deletion and health issues up against. Neither I or the doctors know what the future holds for her. Listening to others is a reminder of how thankful we should be for each and everyday.
Today was also a big reminder to me that children with special needs prove their doctors wrong all the time. Celebrate today's accomplishments and stop worrying so much. God is in control.
These kids are so determined, and the most happiest children around. For the most part they don't know that the life they live is not normal. What most people don't realize is it that these children don't want sympathy, nor do the parents want sympathy either. We want to be treated just like everyone else. You may have to be patient with us and have some compassion. Compassion and sympathy are two different things.
By the way Bug thinks that it is the norm for kids to spend hours a week in therapy, or going to the doctors all the time.
Have a blessed day. In your prayers today lift up all those who suffer from a rare disease.
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