Welcome to the first blog for the UK Neutropenia Support Group…..
……we are a small friendly group dedicated to raising the profile of Neutropenia in the UK, and to provide a support network for sufferers, friends and families of the condition Neutropenia.
We started initially with a Facebook group a couple of years ago, which has slowly but steadily grown with interest and support from people across the globe, not just in the UK. We have a twitter feed also, and hope that this year we will be able to become an organisation with charitable status (or similar) so that we can fund raise for better research and education within the UK. We already have the back up of the UK member of the SCNIR (Severe Chronic National International Registry), Professor Sally Kinsey and we hope to gain further support from other professionals across the UK.
The story so far comprises several strands for sufferers in the UK;
- Neutropenia in its own right is a rare disease and therefore frequently misunderstood, misdiagnosed and mistreated.
- Neutropenia can be debilitating and life threatening.
- There is little knowledge ‘out there’ about the condition, nor is there much support and sufferers and their families often feel isolated.
- The NHS can be a bit of a postcode lottery in regard to diagnosis & treatment due to funding issues across the country.
With all of the above in mind, the facebook group was launched and a small group formed and grew. Over time it has become clear that variances across the country via the NHS mean that everyone is getting different advice and treatment – some better than others, dependent on the knowledge of the professionals involved. It has become clear that there are a lot of differences in procedures, opinions, diagnoses & treatment.
I write as a sufferer, formally diagnosed several years ago, though it now appears from my medical records I may have had this condition much much longer…..the jigsaw pieces over the years are starting to come together and what many people thought of as hypochondriac-ism, is now being proven as actual illness with genuine and now validated reason for this constant in my life.
This all sounds a bit cryptic to those who have no idea what Neutropenia is perhaps…..all shall become clear in my next blog post so please keep on reading and do sign up for future instalments.
Please feel free to follow the group on Twitter @UKneutropeniasg and join our facebook group http://on.fb.me/1xvDani
ukneutropeniasupportgroup 