Hello and Welcome! I am a 17 years old girl from Denmark. I was born in early 1993 by two wonderful parents. Unfortunately, after living for a few months, I got my teeth. I began to chew on my hands, lips and tongue. It was terrible, my parents had told me.
Read my story:
As a baby, I never cried when the doctors did tests that usually make babies cry. I never cried when I was hungry or - actually - I just never cried. When I was about 5-6 months old, I started teething! My parents thought this was the most horrible thing they've ever seen in their life. I started chewing, but never on my baby toys, always on my hands (If I chew on my baby toys, I usually did it too hard). They thought it was more scary when I started chewing on my tongue and lips, because I could be covered in blood without feeling it. They went to about 5-6 different doctors, but none of them could give them an answer. When they went to their next doctor, he could see what was wrong by first sight: I have CIPA (Congenital insensitivity to pain with anhidrosis) and is not able to feel pain.
Congenital insensitivity to pain with anhidrosis (CIPA) is an extremely rare inherited disorder of the nervous system which prevents the sensation of pain, heat, and cold — or any real nerve-related sensations (including feeling the need to urinate); however, they can feel pressure. CIPA is a type IV of hereditary sensory and autonomic neuropathy (HSAN), known as HSAN IV. A person with CIPA cannot feel pain or differentiate even extreme temperatures. "Anhidrosis" means the body does not sweat, and "congenital" means that the condition is present from birth. The odds of being born with this condition are 1 in 125 million.
You may think a life with no pain is a true paradise. Think twice! A life without pain is a dangerous life, because I cannot feel when I'm seriously injured!
In my whole life, I have been driving from home to hospital constantly, because my parents wanted to be sure I had no injures. Everytime I fell or anything like it, they would drive me to the hospital. Because I cannot sweat, I can easily die from overheating. I will have to check my temperature every day. My parents would even buy ice-bags to make sure I would not get too hot when we were outside in the summer. I have an alarm on my watch(or my cell phone when I'm not in school), because I cannot feel when I have to go to the bathroom(my friends have always thought that was weird).
My everyday life:
Everyday, there are many things I have to check through the day. Eyes, skin, mouth, tongue, gums, joints, feet, hands - I even have to count my teeth! Oh, and don't forget - check my temperature, my bathroom-alarm and make sure I haven't bit my fingers off!
Do you believe a life without pain is paradise? Well, the truth is: It Sucks!
Read my story:
As a baby, I never cried when the doctors did tests that usually make babies cry. I never cried when I was hungry or - actually - I just never cried. When I was about 5-6 months old, I started teething! My parents thought this was the most horrible thing they've ever seen in their life. I started chewing, but never on my baby toys, always on my hands (If I chew on my baby toys, I usually did it too hard). They thought it was more scary when I started chewing on my tongue and lips, because I could be covered in blood without feeling it. They went to about 5-6 different doctors, but none of them could give them an answer. When they went to their next doctor, he could see what was wrong by first sight: I have CIPA (Congenital insensitivity to pain with anhidrosis) and is not able to feel pain.
Congenital insensitivity to pain with anhidrosis (CIPA) is an extremely rare inherited disorder of the nervous system which prevents the sensation of pain, heat, and cold — or any real nerve-related sensations (including feeling the need to urinate); however, they can feel pressure. CIPA is a type IV of hereditary sensory and autonomic neuropathy (HSAN), known as HSAN IV. A person with CIPA cannot feel pain or differentiate even extreme temperatures. "Anhidrosis" means the body does not sweat, and "congenital" means that the condition is present from birth. The odds of being born with this condition are 1 in 125 million.
You may think a life with no pain is a true paradise. Think twice! A life without pain is a dangerous life, because I cannot feel when I'm seriously injured!
In my whole life, I have been driving from home to hospital constantly, because my parents wanted to be sure I had no injures. Everytime I fell or anything like it, they would drive me to the hospital. Because I cannot sweat, I can easily die from overheating. I will have to check my temperature every day. My parents would even buy ice-bags to make sure I would not get too hot when we were outside in the summer. I have an alarm on my watch(or my cell phone when I'm not in school), because I cannot feel when I have to go to the bathroom(my friends have always thought that was weird).
My everyday life:
Everyday, there are many things I have to check through the day. Eyes, skin, mouth, tongue, gums, joints, feet, hands - I even have to count my teeth! Oh, and don't forget - check my temperature, my bathroom-alarm and make sure I haven't bit my fingers off!
Do you believe a life without pain is paradise? Well, the truth is: It Sucks!
I've met a few CIPA sufferers and none of them has made it through so well as you have. But being the first, only and oldest with CIPA in your country must be sad... Hope you are well<3
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