We are wondering if any other CLL patients are having the same issue or taking the same stand as we are here in Ireland.
As some of you know my wife Jan was diagnosed in 2011 age 39 after 3 years very sick she was fortunate to get on an Ibrutinib trial in Leeds in 2014. Thankfully bloods are good now but her immune system never recovered and she has repeated infections and must have IVIG's monthly since 2012.
This is our problem, the schools in Ireland have reopened and we have made the decision not to send our teenage children back due to the increasing COVID numbers in the community. This has not been an easy decision as we know school is important for mental and emotional wellbeing.
Our HSE (NHS equivalent) has stated that a person that is extremely high risk can avoid going to school and a remote learning plan can be provided but the children of an extremely high risk parent must attend and are denied a remote learning plan.
we disagree with this approach and see it as a complete lack of understanding of CLL and the risks that COVID presents.
We were fortunate that a politician has taken up our cause and I will post what he said in our parliament last Friday. I think it was the first time ever that the words Chronic Lymphocytic Leukaemia was used in our parliament.
We would love to know is there any other CLL families in a similar boat and also should we push for the guidelines to be changed to protect high risk family members.
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Click on 3 minutes to hear Gary Gannon TD
Michael and Jan
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Irishcll
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I’d be threatening them with the Human Rights Act and whilst it appears to be different for the U.K.,
The Irish Human Rights and Equality Commission says this;
‘Interdependent and indivisible, meaning that rights are linked and not protecting one right may impact on another. For example, failure to protect the right to health may affect the right to life’.
Article 41 relating to ‘protection of the family’ could be argued to be under threat here because arguably, the only way you could protect your wife is to separate her from the children if they are exposed to high risk situations.
I don’t profess to be an expert on this but I do know public institutions don’t like the idea of possible Human Rights violations being thrown at them. In the U.K., the right to protection of the family is enshrined in Article 8.
It’s a difficult situation but I can’t see why your children couldn’t be home schooled whilst extreme risk exists. Hope your MP can help with this, it seems to be discriminatory.
Good luck! (I’m afraid I can’t open your links even by pasting them).
I am not in Ireland or I would be thinking of getting a petition started for all those in a similar position to yourselves, as there must be many at risk. It could be an issue here (UK) but I don't have children so not sure. However there must be many other cases where health due to other illnesses and conditions will be put at serious risk.
You have started well engaging with your Politician and I just wanted to wish you well as you strive to enlighten the powers that just do not understand how serious this is for those with compromised immune systems.
This is also an issue for those in the UK who were shielding before 1st August and whom the government has decided are no longer Extremely Vulnerable because infection rates have reduced. Human Rights Act notwithstanding, the situation here is arguably worse.
According to the UK government (though Scotland, Wales and NI may see it differently) parents like you, AS WELL AS schoolchildren themselves who are clinically vulnerable, have no excuse: attending school is compulsory unless their area is under temporary lockdown or the children are already being home-educated with inspectorate approval.
Less of an issue in the USA with many schools not open for live classes in many states and offer an option for virtual learning where they are open. I'd be interested in the response of other states beside my California.
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Regeneron treatment for CLL people with early Covid symptoms 
Important SARS-CoV-2 and Covid-19 information for Chronic Lymphocytic Leukaemia/CLL patients
