9 August 2017 at 5:04 pm #55079
I have used the site on a number of times and inevitably somebody has more experience than me and I do not like to interfere with that person/s as I feel it is not right?
My brief history is that I have had NETS on and off for eleven years having many treatments where some have worked for a short period and some not. This has been very gruelling for and my great family who have stuck by me. During this time I suffered low immune system a massive increase in my body of calcium and epilepsy taking my driving away. Needless to say not very pleasant. I wont tell my whole story on here as I have done it a couple of times before and some might find it boring? I also want to avoid a comparison of problems to see who is the worse or better off. All I know and care for is the many many patients on here who are suffering daily with this horrible condition. There are not many treatments in the pipeline that are all being tested and my own work shows that people are realising the serious of NETS and becoming aware that will I believe holds they key and makes me a lot more positive. You can get some great information and lectures from experienced and qualified Specialists from the office but I have also found You Tube a valuable source.
I know I have gone on a bit but I believe that you needed an introduction of Myself. Currently, I realise I am extremely fortunate amongst us all and feel guilty a lot of the time and think how I can help others? I have and are doing some work for CRUK as I am now 53 and sadly retired through my health. I am a version of L90 but don’t ask me which one as there are different types. Mine is made in Holland transferred to Southampton and then to Sheffield in time for my treatment. I have had this since Sept 2015 and feel guilty that it is not freely available. It has made a massive positive impact on my life with my family but you still have down days with Anxiety and depression but compared to my life before there is a change that is great.
You ask what is my reason for coming onto this forum?
Well I have seen many Natter Groups all over the Country but the closest to me is Sheffield and vast distances that I find it difficult to travel and getting a Carer due to my anxiety and depression.
Along with Lindsey at the office we are trying to get a Natter group in Hull. This will take a great deal of effort from me and also Lindsey but I would be close to her for her great knowledge and experience to help me put one together.
What I need to know as I cannot approach my Specialist as it will impinge on Patient Confidentiality but I wanted if possible to know in Humberside or surrounding area who would be interested in taking part in a NET Natter group in Hull? I was hoping by coming on this forum and seeing possible numbers and interest intending to come to such group. Dependant on the numbers it will give us an idea whether Hull is a good place or the NET Foundation keep to their locations that are currently in place? It may take 3-6 months to put in place but please let us know if this would be good and suitable for you given our different conditions.
Thank You for your time and I wish you all the very very best for you and your friends and families.
WE ARE JUST INTERESTED AT THIS TIME IN PATIENTS WHO MIGHT ATTEND? It will not ne easy for me but I am willing to give it a go with Lindsey.
- This topic was modified 4 months ago by dorro.
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