The prime minister has today made a speech regarding new measures that’s going to be taking place for certain illnesses. If you fall into the category then they will be contacted by post, text etc. There’s a lot involved in this new task that’s now been set to battle Coronavirus. My question is will we be included in this or ppl like me who have idiopathic cerebellum ataxia, perphipal neuropathy, myoclonus, dystonia?
Here’s the speech. pscp.tv/w/cUZVMzFyYVFaUlptb...
Dear Legs-alive
I listened to Boris Johnson’s update and have looked at the guidance for the groups of the very vulnerable people. They are as follows-
‘What do we mean by extremely vulnerable?
People falling into this extremely vulnerable group include:
1. Solid organ transplant recipients
2. People with specific cancers:
people with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer
3. people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
4. people having immunotherapy or other continuing antibody treatments for cancer
5. people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
6. people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs
7. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
8. People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
9. People on immunosuppression therapies sufficient to significantly increase risk of infection.
10. Women who are pregnant with significant heart disease, congenital or acquired.’
The progressive ataxias do not fall within any of these groups above.
As I have said before in a previous post people with progressive ataxias are at an increased risk of severe illness if infected with Coronavirus and should be particularly stringent in following social distancing measures.
Although the progressive ataxias are not in the groupings above for people felt to be extremely vulnerable, you would not be criticised in any way for deciding for yourself that you want to escalate from social distancing to social isolation. I know and have heard of plenty of people who do not fall within the criteria of being ‘extremely vulnerable’ who have decided themselves to self isolate.
Whatever you decide to do please ensure at a minimum that you are following social distancing measures stringently.
Best wishes
Harriet
Many thanks for your reply Harriet. I have myself been socially distant since last weekend. I haven’t Benn out nor had visitors, my daughter did call today but kept to the 2 m distance suggested. I personally believe we should all be doing this regardless of illness or not. Do we not fall into the category under the rare illness department tho?
Many thanks Tracy
Hi Tracy
The government have said we should all be socially distancing where possible. Apparently the town where I live was extremely busy today with somebody describing it like a Bank Holiday. There are some very silly and selfish people out there.
It sounds like you are being very sensible. I am only going out for food shopping at the moment but try to keep 2m apart from people.
People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
Above is the wording I think you refer to. This refers to people who have a rare disease that is also metabolic in nature (which ataxia isn’t), not people who have any rare disease.
BW
Harriet
Again many thanks for your reply. Ah I see thanks for explaining it, yes that’s the bit I was referring to but wasn’t 💯 certain what it referred to.
Yes it’s the same where I live, with 1 cafe remaining open & customers inside!! Unbelievable! & apparently the police can’t force them to close! Only remind them of what the pm has said & why! It’s crazy, they should legally be forcing them to close there & then, but I do believe within the next few days the Uk will go into total lockdown with ppl only allowed out at certain times, like that’s happened in previous countries before us. I don’t think ppl fully grasp the situation & the results of their actions, despite what the majority have seen regarding China & Italy. I just hope In the days that follow ppl will quickly do as asked so this can pass quickly & then we can all get back to some sort of normality!
Once again many thanks for the swift reply & the explanation, much appreciated.
KR & Stay safe
Tracy
SpeechVive 
Professor Hadjivassiliou
Will I be able to renew my mobility car?
Cerebella ataxia 
