Prue DeAraugo
RyanaJust Words...Living with NF1
February 5th 2010 03:07
As a parent, I can only imagine that living with a child who has been diagnosed with an illness, that may affect their quality of life, could best be described as a challenge...a challenge to understand, a challenge to cope and a challenge to stay resilient. But the person who wrote the following piece does this every day of her life...
There are words spoken every day, however there are certain words that when placed together no parent wants to here. It was a Tuesday, the day I heard those words that sent my mind racing.
I had recently had some medical tests completed for my son who was 12 weeks old, and I was attending a regular pediatrician appointment. It was there were I was told that my son was diagnosed with Neurofibromatosis type 1, also known as NF1. As I listened to those words, that I couldn’t even pronounce, I was moved to tears and started feeling paralyzed with thoughts running through my mind. I started blaming myself, thinking; “What could I have done differently during my pregnancy? Had I eaten or drunk something I shouldn’t have?”
I had taken him to hospital a few weeks earlier as I was concerned that he had been ill, and wanted reassurance it was nothing to be concerned with. We had been given several tests, and all in all his illness had been a mystery to everyone. He had further tests to assist with providing an answer when the Pediatrician noticed that he had more than 6 café-au-lait spots (brown birthmarks) over his body. I thought nothing of the spots because everyone has birth marks don’t they? But café-au-lait spots are just one of the symptoms for diagnosing NF1.
After our first visit with the Neurofibromatosis Clinics at the Royal Children’s Hospital in Melbourne, I began learning about NF1 and found out it is a genetic disorder. NF1 is not a rare disorder, it is the most common neurological disorder caused by a single gene. NF1 is the more common form of NF, occurring in 1 in 3,000 to 4,000 people worldwide. NF1 touches all races and both sexes equally. About half of the all people with NF1 have inherited the gene that causes it from parents, the other half because of a change to the gene. My son is one of the latter.
NF1 can cause skin changes as well as tumors (which are typically not cancerous) along the nerves in the body. There are other problems that can occur with NF1 like learning disabilities, high blood pressure, headaches and others that have not been listed.
He is almost 2 years old and has a tumor that is growing on the back of his neck. My goal and partly the reason why I am writing this, is to raise awareness and allow my son to have the knowledge that brings power. My aim is to raise my son with the confidence and a strong personality so if he does have visible signs of his condition he will not be affected by people’s reactions.
There is currently no cure for it and every case of NF1 is different. It can affect a person very mildly to more extreme manifestations. I guess this is what scares me about NF1, I don’t know what to expect or what is going to happen. When I see photos and learn more about NF1 my heart becomes heavy for families that have been affected by NF1 or will be affected by it.
However with the strength that I project into my child daily, those words that had paralyzed me in the beginning have now provided me with the knowledge and power I now hold.
To learn more about NF1, click here for the Royal Children's Hospital information site or the NF1 Association of Australia.
I had recently had some medical tests completed for my son who was 12 weeks old, and I was attending a regular pediatrician appointment. It was there were I was told that my son was diagnosed with Neurofibromatosis type 1, also known as NF1. As I listened to those words, that I couldn’t even pronounce, I was moved to tears and started feeling paralyzed with thoughts running through my mind. I started blaming myself, thinking; “What could I have done differently during my pregnancy? Had I eaten or drunk something I shouldn’t have?”
I had taken him to hospital a few weeks earlier as I was concerned that he had been ill, and wanted reassurance it was nothing to be concerned with. We had been given several tests, and all in all his illness had been a mystery to everyone. He had further tests to assist with providing an answer when the Pediatrician noticed that he had more than 6 café-au-lait spots (brown birthmarks) over his body. I thought nothing of the spots because everyone has birth marks don’t they? But café-au-lait spots are just one of the symptoms for diagnosing NF1.
After our first visit with the Neurofibromatosis Clinics at the Royal Children’s Hospital in Melbourne, I began learning about NF1 and found out it is a genetic disorder. NF1 is not a rare disorder, it is the most common neurological disorder caused by a single gene. NF1 is the more common form of NF, occurring in 1 in 3,000 to 4,000 people worldwide. NF1 touches all races and both sexes equally. About half of the all people with NF1 have inherited the gene that causes it from parents, the other half because of a change to the gene. My son is one of the latter.
NF1 can cause skin changes as well as tumors (which are typically not cancerous) along the nerves in the body. There are other problems that can occur with NF1 like learning disabilities, high blood pressure, headaches and others that have not been listed.
He is almost 2 years old and has a tumor that is growing on the back of his neck. My goal and partly the reason why I am writing this, is to raise awareness and allow my son to have the knowledge that brings power. My aim is to raise my son with the confidence and a strong personality so if he does have visible signs of his condition he will not be affected by people’s reactions.
There is currently no cure for it and every case of NF1 is different. It can affect a person very mildly to more extreme manifestations. I guess this is what scares me about NF1, I don’t know what to expect or what is going to happen. When I see photos and learn more about NF1 my heart becomes heavy for families that have been affected by NF1 or will be affected by it.
However with the strength that I project into my child daily, those words that had paralyzed me in the beginning have now provided me with the knowledge and power I now hold.
To learn more about NF1, click here for the Royal Children's Hospital information site or the NF1 Association of Australia.
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