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Please visit Alyssa's Blog to read about what is going on with her from week to week. It's updated as often as is possible, with our hectic lives.
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News
With the help of several different volunteers and fundraising events over the last few months, I am delighted to announce that we have now raised more than the required amount for Sensory Room. So all we need now is for the building work to go ahead, then the Sensory Team can create Alyssa's Sensory Room!
I am really excited that we are almost at the end of this latest fundraising venture. And hopeful that the Sensory Room will be up and running in a very short space of time!
Thank you to all who have helped us - in whatever way - to reach our goals!
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I hope to share with you what my daughter's life has been like so far ... so you can all truly understand and appreciate the gift of pain, which we take very much for granted!
Alyssa has Congenital Pain Insensitivity and does not feel pain anywhere other than internally. This has led to many unintentional injuries and mutilation. I hope to some day provide a support group for those who suffer from Pain Insensitivity - like my daughter - but for now will write about her in the hope that others shall find us during their research. I hope to find as many others like Alyssa (and their families) as possible.
I am now part of a private group hosted through Facebook, which offers support to those experiencing Pain Insensitivity - regardless of cause - and I am happy to be contacted directly if anyone would like more information.
Alyssa's Pain Insensitivity is believed to be due to a very rare genetic mutation, of which there are a few very similarly related disorders. These disorders are known collectively as the HSAN (Hereditary Sensory Autonomic Neuropathies) and are some of the rarest disorders in the world. There are 7 recognised different types of HSAN, and - as well as the Pain Insensitivity - these have many other symptoms affecting sufferers.
Alyssa is believed to have Congenital Autonomic Dysfunction (with Universal Pain Loss) and blood has been taken from both Alyssa and myself, in the hope that a gene search can be started and the gene finally identified. If this happens (using blood also from a small group of other patients Dr Axelrod has) then this will mean that future sufferers will be able to be genetically blood-tested for this disorder. This will make things much easier!
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If you would like any further information, please feel free to contact me at:
understandingalyssa@hotmail.co.uk
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