Stories tagged Hereditary Sensory and Autonomic Neuropathy type-4

My mother, Laura, now 51 was born with this disease yet no doctor ever diagnosed her with it. Now, I have two daughters, Mahayla 3, and Jorja 2, that have been diagnosed with Hereditary Sensory Autonomic Neuropathy. We live in Florida and the geneticist recommended that we move north to cooler weather. Due to the girls not being able to regulate their body temperatures and them constantly running fevers for no apparant reasons. However, I have raynauds and possible scleroderma thus cannot stand to be in cold weather. But can handle it with keeping warm. My oldest daughter has the symptom of not feeling things. She has cut herself on the bottom of her feet and does not know it until I am giving her a bath and I ask her.
I do not know what to do. I am a single parent and I work. The genecist told me not to let them ride a school bus and make sure that we had things prepared in case the electricity ever goes out. So I am always trying to figure a way to keep them cool. During the summer they stay in the apartment and cannot go outside. Now I am considering moving to Alabama but cannot really afford to move and to make sure that they have everything they need to stay alive.
If you have any ideas please feel free to email me @ pamelajean98@yahoo.com

Tags : HSAN, Hereditary Sensory and Autonomic Neuropathy, Hereditary Sensory and Autonomic Neuropathy type-4, HSAN-4

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Recently, a five-year-old girl named Gabby Gingras was in the news. Gingras has an interesting predicament: she was born with a disorder that keeps her from feeling any physical sensations like pain. Her disorder is called Hereditary Sensory and Autonomic Neuropathy type-4, or HSAN type-4.

It's a tough life when you can't feel anything. Gingras wandered around for quite a while with a broken jaw once, and no one noticed until she developed a fever due to an infection the broken bone caused. Gingras can't control her body temperature in extreme weather, either. Since her body can't feel pain, she can't feel heat, and her sweat glands don't kick in when she starts to get hot.

She lost an eye due to excessive rubbing and scratching, and now wears a prosthesis—a fake eye. Her baby teeth had to be pulled out because she started to chew apart her tongue and the inside of her mouth. (She didn't stop because it didn't hurt.) Her other eye is pretty bad; she has a prescription of 20/200. Her parents are debating whether or not to put her through eye surgery. If all goes well, she would be able to see much better. If not, she could be totally blind.

Luckily for the rest of us, this hindering trait is extremely rare; only 100 cases have been documented.

--information in this article was found in the Minneapolis Star Tribune on Sunday, May 15th 2005.

Tags : Gabby Gingras, pain, Hereditary Sensory and Autonomic Neuropathy type-4, HSAN type-4, Hereditary Sensory and Autonomic Neuropathy

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