I have limited cutaneous systmic sclerosis type of sclerderma no lung involvement on no medication at present concerned about how my body would react to covid 19 has anybody had the virus and how did your body cope. just a little worried thanyou
covid l9 worries: I have limited... - Scleroderma & Ray...
covid l9 worries
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Hi there, it is perfectly understandable to be concerned about how you would respond to covid 19. I am sure that pretty much everyone in the world, especially those with preexisting health concerns are worrying about the situation at the moment. But, like many things in life it is a question that no one can give you a definite answer to, and you could spend a lot of time thinking about and analysing, and still you would end up with no definite answer.
You could look at the risk factors...the main one being age. We know that the majority of people having real problems are the very elderly and vulnerable. The main population affected are those in nursing homes. Other risk factors are those with serious underlying health issues, particularly those affecting the lungs. Also, if you are on medications that significantly suppresses your immune system then it is going to be difficult for your system to fight a virus. But, other than that no one can guess about how your immune system will respond. Having an autoimmune condition does not affect whether you will get it and it does not affect how you would then respond to it.
The best thing to do is to keep away from people if possible. Follow sensible guidelines on hand washing, cleaning in general and social distancing. And look after yourself so you are as healthy, fit and well rested as you possibly could be.
Please don't spend your time worrying about the situation because that will not affect whether you get it or not, and it will only increase stress which will not be good for your scleroderma because it will increase the activity of your immune system.
Take care
Lucy xxx
I have the same as you, no heart or lung involvement. My problems are mainly my hands.
I received a letter from the Royal Free London (where I get seen for my specialist check ups) that told me that due to my condition I am considered higher risk, that in case of contraction I might be more likely to get a more severe reaction to the virus, i.e. more likely to end up in ICU. I do think its more of a generic letter though, especially as I don't have lung / heart involvement.
However... 2 days ago I saw a discussion on TV of doctors snd scientists discussing new findings. So according to that Covid-19 is not a purely respiratory disease as was thought. Obviously every individual deals with the infection in a different way. New findings show that the times when the illness / situation can turn serious for infected people is when their immune system turns into over-drive to fight the virus (as was the case with the spanish flu - another corona-type virus which made the rounds in 1918).
So it kind of makes sense that (lung/heart involvement or not) we might indeed be higher risk, having an already compromised immune system.
But yes... that is me trying to make sense. Generally it is all assumptions at the moment, while the scientific world still tries to find solutions and explanations.
Be safe and look after yourself. But do not forget to find enjoyment and fun in those crazy times instead of worrying yourself too much. Better times will come!
Hi there, I thought I’d answer this in the hope might be bit reassuring. I have UCTD with signs of limited Sclerosis- mainly gut issues. I also attend the Royal free and have had the shielding letter. I do believe (as does my GP) that it is highly likely I’ve had the virus. I became ill with flu like symptoms on the 18th March. Slight cough, and did have attacks of difficulty breathing. Was checked out in hospital but not kept in so no test. They gave me introvenus antibiotics and some to take home as found a chest infection. My husband who is 69 just had dry cough, sore throat and aches. Been struggling with my gut issues since but fine otherwise now. They really don’t know who is really at risk but playing safe I think. I’m also 67 and on numerous drugs (not immune suppressants but I am on Amlodipine) and have been ill for nearly 20 years with some worsening in last couple of years so I didn’t get off too badly!
Take care