I have PCD, live the U.K. I am not self isolating yet but I’m sure it’s only a matter of days before I do! But I have 3 children at school twins aged 5 & a 7 year old!! They are all healthy but I’m getting very worried about the risk they pose to me going to school. I’m wondering whether to speak to the head of the school on Monday re taking them out of school! Would love to hear others views, anyone else in the same boat? Or those who have started self isolation ( without the virus) as a precautionary measure. Thanks
Covid-19 self isolation/social distan... - PCD Family Suppor...
PCD Family Support Group (UK)
I'm not self isolating yet but in a similar boat to you, two children, one with a Childminder and one at school. I'm taking it a day at a time for now!
I live in the US and have been social distancing for the past 5 days. I haven’t left the house. I have been disinfecting and making certain to do all my treatments. I’m in college and we’re closed for 3 weeks. And public schools in the area have all closed indefinitely. Just make sure to wash your hands and stay home if you don’t feel well!
Hi Gwen, what part of US are you from? Is your city on lockdown as well? I’ve been stress cleaning for days. Very scary right now
Hi, I am also taking things a day at a time, working from home but with 2 kids at secondary school, one with GCSEs. It is very difficult but am I think all you can do is limit social contact - this will potentially be months....
I have a daughter with PCD who is still going to school . I am an orthodontist who is still working with a useless mask as that is the guidance from department of health. I am worried I will pass the virus onto her unwittingly. If I don’t go to work I will not be paid and probably be sacked .
I think if PCD is publicly stated as an at risk condition then the whole family needs to self isolate or there is no point . I am hoping for clarity today . Deciding what to do is very stressful .
my son is 15 with PCD & dextrocardia so I know it’s probably different for him , if you’re working & have to provide for your family it’s a much tougher choice .
But after a lot of discussion we decided last week to keep him home and revise for exams , I don’t feel the current advice from the UK government is enough and I believe sadly a lot of parents won’t keep there children at home if they have temperature or cough.
It isn’t an ideal situation but for now at least , we have decided it’s the best course of action .
It’s a worrying time for everyone .
I'm 49 with PCD and have been self isolating since last Thursday. I'm lucky that I can work from home and also that our schools in Ireland have closed. If your situation allows, I wouldn't send your kids to school. As a PCDer, I really wouldn't like to get this virus.
Hi I’m 48 with PCD living in Scotland. As of today we’ve decided to keep my 11 year old daughter off school and I plan to get work from the school to do with her at home. My husband is a dentist and we have “zoned” the house so that he can self isolate when he comes in from work. Stay well everyone!!
Hello, I have two boys with PCD and we started homeschooling last week. Luckily I used to be a primary school teacher, so it’s not too overwhelming, but I do worry as to how long this will need to be the case. I say do what you feel is right, my gut told me my boys needed to be at home, although I am aware that is not official PCD advice in the U.K. at the moment.
Hi ... we are trying to get an update from the adult physicians about the latest advice. Keep checking our website pcdsupport.org.uk
Update to my post: it’s been a busy day! We are self isolating as of tomorrow. The school are supportive, my three children are finishing school tomorrow and suspending swimming lessons! I’m working from home for the foreseeable future & my husband too. I saw my respiratory consultant today too who obviously is encouraging us PCD’ers to self isolate.
Hi all, I am 59 and was found to have PCD in my early 20s but am generally well with some bronchiectasis only. I live in the UK and have been working from home and social distancing as best I can. Apologies if i have missed a post but I would be interested in a clinical opinion on how at risk we PCDers are - is social distancing OK if we are otherwise healthy?
Hi Jo, just wanted to reply as I am in a very similar situation, I have PCD with dextocardia and bronchiecstasis, I also have 3 young children (4 months, 4 and 7 year old) We actually took the kids out of school on the Tuesday before schools closed worrying they may bring something home. Its difficult with food deliveries being down and not being able to get to local shops. Also weird as I Feel very fit and staying active everyday doing Hiit and circuits etc which kids enjoy joining in, Just 12 weeks seems a long time to have to stay isolated and maybe more as daily advice changes.... Also feels sad for my kids as They won’t have interaction whilst we are advised to stay in however long that might be 🙄.
Have seen there is a face book group so will look to join this.
Lucy, everything you said is the same for me. I feel such sadness for my children but my feeling is that if the country doesn’t act on advice everybody’s children will be staying in just like Italy, Spain and France! Like you I feel fit and well but I also know with my PCD that can also change very quickly especially if we are less active and mobile. I think it’s really really important for us to find ways of exercising regularly everyday not only for our lung health but for our mental health too. I’m on Facebook so I will look out for the support group I may be already on it I get confused which ones I’m on the names are similar. Keep safe.
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