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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.
David McCabe has now created a blog to record his and Richard's journey from Lands' End to John O'Groats, starting this Saturday (4th September). Please visit the link above named "Lejog for Alyssa" to read about their progress
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We (my fellow volunteers and I) are taking part in various fundraising events, to raise money for Alyssa's Sensory/Padded room to keep her safe, and to help her with her Sensory Issues.
If you would like to sponsor us for any of the events; please follow "Alyssa's blog" link above and click on the Donate button. Any amount - no matter how big or small - is greatly appreciated!
Thank you for your help xx
News
David McCabe of Back2life clinic in Falkirk, and Richard Frost of Richard Frost Ostoeopathy in Surrey, are planning to cycle from Lands' End to John O' Groats (over 850 miles!!) and are raising money for Alyssa in the process. They will set off on Saturday 4th September and it will take them approx 10 - 14 DAYS to complete!
This is absolutely amazing of them to be thinking of Alyssa while they take on this challenge, and I would ask everyone to get behind them and support them. I hope to follow their progress as they make the journey from one end of the UK to the other.
I have added links to their websites in the menu above. Please visit their sites and learn more about osteopathy, and the various other specialties available at their clinics. Perhaps there is also something they can help you with!
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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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