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
Hi, Pamela.
I'm sorry to hear about your two little girls. First, read the post "She Feels No Pain." There's a lot of information in the comments below the story, including contact information for Steve Gingras, father of a child with this disorder and co-founder of Gift of Pain, Inc, a support group for people affected by Congenital Insensitivity to Pain and their families. Mr. Gingras might be able to give you the advice you seek.
Pamela,
I can only imagine what you and your girls are going through; it must be so difficult for you. I'm sure you've probably already seen, but ABC's Extreme Makeover Home Edition just did an episode on a family with a daughter who has HSAN. If you have not seen this already, I suggest that you watch it on abc.com; it is truely inspiring and the family has a few techniques to protect the poor young girl that you may find helpful.
The condition that your girls have is extremely rare yet fascinating. Unfortunately, as I'm sure you have realized by now, is costly. My advice to you is to make the situation known to your community. Most people would be willing to try to help you out financially. If you are an active in a church, try getting the word out in the parish. You may also want to look into homeschooling. The temperature in most schools is rarely set comfortably and never really consistent. I'm sure that your daughters' teachers would probably be willing to spend some time with them outside of the school.
I wish you and your girls the best of luck. Stay strong, and never hesitate to ask for help and support.
I myself just saw the episode on homemake over . Wow i cant imagine what you are going through.. After i saw the episode i desided to write a paper about it for my english class.. I will let you know if i find any usful information about it.. I will be doing alot of research on it..
My family is the Extreme Makeover Family and we are also trying to help others since it is extremely rare. Kayla was seven years old before we found another person in the world with it. A friend had seen the Gingras' on the news and so I contacted the news station. Please contact through my website and we would love to try to help you with information and support. www.kimberleywoodhouse.com
I am in search of information on HSAN can you all give me links or offer me suggestions on where to find more information on this congenital disease?
I am just a teenager but I can understand what you are going through. I am researching for a school enrichment project that will be sent to NY. You have inspired me to do my project on HSAN. So I will be inventing something useful for this condition. If I win, I'll send you my idea.
Move to a country civilized enough to have health care for all its citizens, where you do not need to go bankrupt because you have been born with a disease. Sweden would be a good option; fairly easy to get residency status, cold in the northern part, with well-insulated and warm houses so that you don't have to suffer needlessly. The language is one of Europe's hardest to learn, but most Swedes speak passable English. I never regretted my move (which was for other reason and not to the northern end, but it really is a great country to live in, even if the people are a little cold and distant at first)
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