Lupus and Coronavirus (COVID-19) - UPDATED 25/03/... - LUPUS UK

LUPUS UK

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Lupus and Coronavirus (COVID-19) - UPDATED 25/03/2020

Paul_Howard
Paul_HowardAdministrator

Hi everyone,

We've just published the most comprehensive re-write of our information and guidance about lupus and COVID-19 so far. Please have a careful read of the full article at lupusuk.org.uk/coronavirus.

A significant part of this update is the inclusion of information detailing how rheumatologists are classifying the risk levels for different lupus patients.

If anyone is in crisis, please contact us on 01708 731251 or email headoffice@lupusuk.org.uk and we will do our best to assist. Please note; if you have an urgent medical crisis you should contact 999 or 111 as appropriate.

18 Replies
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Many thanks Paul. Best wishes Kevin

Really helpful thank you Paul, score very helpful

Hello Paul

Thanks for the detailed update which is most helpful. The scoring table is very effective and concise. Take care and kind regards

Euni

Paul, fantastic work. I don't know any one else in a charity who is looking after its members, or those effected, as amazingly as you have done. Thanks for the clarity, support, guidance and communication right from the start of this 2 to 3 weeks ago and I'm sure you will continue to communicate any developments as they happen.

👍

Paul_Howard
Paul_HowardAdministrator in reply to RockinRic

Thank you RockinRic. We have an amazing and dedicated team at LUPUS UK. We'll do everything we can to support people through this.

Clear and thorough, Paul. Thank you for the clarification. We don’t even have this sort of sophisticated stratification system in the US as far as I know. But I am confident these guidelines are similar to what our doctors are telling us. Certainly consistent with what I was told about my lower risk.

Much appreciate your good work.

Kay

Blessings Paul to you and all the staff here. In such unprecedented times, you ring the bell, as the bell tolls for thee. And so many of us here depend on your true dedication, caring, commitment, and support for us all. No matter where we live, humanity for others is here in this place, HealthUnlocked is like no other space in the world. I cannot thank you enough for the collective, most informative information. As Kay has expressed, our systems are not as fluent . So, given the information here, we can better talk to our health care providers in the US. Taking this solid guideline and verbatim it does get our Doctors attention. Keep up the fantastic works. You make the difference for this community. Bless you for caring. My prayers for health to you and your family, peace. thestormy sunshine:)

Perhaps we should change the name of the charity to Lupus World or Lupus Earth. We are all in it together planning to come out the other side together. Stay safe. Best wishes Kevin

thestorm
thestorm in reply to Kevin53

hi Kevin, that's a great idea. For together we are one!!! United together for the greater good. In our futures here I hope we can invision us all united, linked together by more than these media's. Tethered fortunately because of HealthUnlocked loved. peace, healing love, thestormy sunshine:)

Hidden
Hidden in reply to thestorm

All this wonderful talk of being united the past few days... I keep have that CokeCola song playing in my head ‘ 📝 I’ll like to teach the world to sing 🎶 In perfect harmony 🎵...,’ (except we can’t hold hands around the world. Instead we’d be reaching out of our front doors to no one there {social distancing} and have our N95 masks and latex gloves on. 😆)

stiff19
stiff19 in reply to Hidden

love that song , have it in music collection 👍😂😂xx

Hidden
Hidden in reply to stiff19

Can’t get it out of my head these last few days🤷🏻‍♀️

stiff19
stiff19 in reply to Hidden

Not a bad thing to have in your head 👍

How are things in your part of the world Brook and with you ? 🙏🤗

Hidden
Hidden in reply to stiff19

We are ok, thanks.

My husband has to work (police) so his employees are all freaked about getting it and he has to keep them calm (he’s the chief). Lately, when he’s off, he’s working because everyone is constantly getting a hold of him about concerns. Luckily he is the least stressed person in the world. He has a ton of faith so doesn’t let things bother him. He knows that if we do our best and give the rest over to God, then all the rest is how it is meant to be. We are never in charge.

My kids are fine too. My youngest grand baby, Harley is getting over a light case of pneumonia, so the isolation has been good timing for her anyhow (she’s 4 months old).

My oldest son, Dylan is a cop, but has been out on leave since last July due to a work related injury, so he still has monthly income without having to be out in the public.

Otherwise my kids can all basically work from home, so they are good. We are lucky.

My second oldest, Austin, owns 20+ rentals in Colorado and I am worried about his renters not being able to pay their rent. What will that do to him since he has mortgages on each of those homes? He has a job as well (financial advisor) so he has income for his family.

Third son Griffin (Harley’s dad) is a patent attorney. As long as he get’s his billable hours in he can work from home. One of his clients is FaceBook so I’m sure he’ll stay busy 😆FaceBook has their own ‘in house’ attorneys but have so much that they also hire outside firms.

My daughter Sagan is finishing her masters in forensic psychology, so this is just helping her finish faster (graduation is May). The school she works for closed their doors, of course, but she has work to do from home still. We had a trip planned for two weeks in Italy to celebrate her graduation this July. I’m thinking that may not happen? Who knows. Still far enough out that maybe?

And my youngest, McCain works advertising. He’s ran his own side advertising ‘Set Fire Creative’ while still in college and continued while working other agencies. About a year ago he decided to run his business full time and quit his other job. The CEO’s (more my age) from the first company he worked for came on and partnered with him. They moved into a beautiful new office just a few short months ago and have several employees. But I think they are all ok to work from home too. We have a few extra pennies in our pocket to help out if any of them need it, which is a blessing (and just a few pennies 😆) but they all seem fine 🙏 EXCEPT toilet paper!! I had been storing extra for years and everyone laughed at me. I have enough to see us through about 9 months. I almost had to ship some to my daughter (two states over) because no one can find TP anywhere. 😆 So now I get the last laugh!

But as far as the state, the country? I think we are ok. Just like everywhere, you have your extreme negative nellies and you positive people. We are under isolation orders but I had already been isolating for about a week or more ahead of everyone, so I feel they all just joined my party. 🎉

Things have always happened. This is life. There have been major plagues, tuberculosis, wars that have been terrifying and isolating as well as devastating and deadly. We will get through this too. We just need to stay calm, use common sense, and carry on living. Isolation? Yes! I think that is the way we will kill this beast! We starve it! But, we are blessed in so many ways. We do have some control over this. It’s not like bombs dropping over head or planes flying into buildings. We are blessed 🙏 And TP May be difficult to find, but we can find it. It’s not gone completely.

We have Amazon and other delivery services. We have the internet for social interactions like these. We can stay connected.

Our water supplies aren’t harmed in this, nor our gas or electricity. We can still turn the lights on or warm ourselves, etc.

And we have entertainment. Books, television, crafts, internet communication to check on loved ones. We’ll get through this!

This actually is a nice respite for the world. Time to rethink the bad path we’ve been going down the past several years and recharge our course.

Like your sweet brother, we will continue the fight and we shall not give up!

Love you Stiff! 🙏

thestorm
thestorm in reply to Hidden

Amen dear Brook. You know how to bring on the Love.. Bless your heart, as your words speak the truth... Love you, thestormy sunshine:)

Hidden
Hidden in reply to thestorm

Love you too Stormy! 🙏

stiff19
stiff19 in reply to Hidden

Ah brook you have a big family🙏 Yes it’s hard times and like you say we are all in it together and I like you hope that our path changes for the better after this and politicians realise their selfish mistakes which are many.

Yes your words are good food for thought 😍🙏

All my love and best wishes to you and your family , hope you and they stay safe 🙏

Whoever thought we’d all ever be talking about tp 😂😂😂

I’ve always had a small stock , a couple of weeks and like you over the years my family laugh at it , and I’d just say I don’t want to get caught short !

Who’s laughing now 😂😂

Luckily here after the initial panic it’s restored in local supermarkets, at least was before lockdown I don’t know now I haven’t had to venture to shops yet, we are going through cupboard stocks and I’m making things that last a couple of days or can be frozen.

Actually this may be good for all forced to be mindful when normally so much wastage. We are making our own bread too which tastes so much better and you know what’s in it 👍😂

Take the positives in any small way 🙏

🤗🤗🙏xx

Thank you so much. Very informative. We are doing our best here in Portugal too to protect ourselves from the virus. Wishing all the best to you friends all over the world.Take care 😷

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