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Vulnerable- regardless of age. Autoimmune diseases.

(27 Posts)
MawB Mon 23-Mar-20 21:01:02

My DD has Psoriatic Arthritis and a 1 year-old little boy. She lives in London -it it any wonder I would welcome a lockdown.
Please read this through
Quick lesson about autoimmune diseases. It takes an average of three years and five doctors for a person to get a proper diagnosis of an autoimmune disease. It is a disease where instead of your white blood cells protecting your body from invaders, they turn around and attack your cells, tissues and organs. Chronic fatigue is another symptom. It is not a cold or the flu, you will never get better, and even a nap will not help. Just eating a salad and hitting the gym won’t slim your face or get the pounds off. Sleeping 10 hours doesn’t leave you well rested, ever. The last minute changes in plans because that “just got ran over” feeling never makes appointments, it just walks in whenever you aren’t ready. Painful joints, muscles and bones, dry skin, breaking hair, hair loss, mood swings, and depression are just the tip of the iceberg. You are also prone to having multiple autoimmune diseases, they typically come in pairs of two. You easily catch viral and bacterial infections. You have days where no matter how hard you try, you just can’t smile for anyone.

I urge you to think twice before passing judgment and thinking our nation is overreacting to the extra measures being taken to curb the spread of this virus. YOU might be able to recover from it no problem however, carry it to someone with an autoimmune disease and that individual won’t be as lucky.

I am watching the ones who will take the time to read this entire post and react. Please, in honor of someone who is fighting Graves Disease, Rheumatoid Arthritis, POTS, MCAD, Sjogren's, Scleroderma, Hashimoto Disease, Ankylosing Spondylitis, Fibromyalgia, Lupus, Sarcoidosis, Hepatitis, Raynauld's Syndrome, Diabetes, Mold Illness, Celiac, CROHN’S, Ulcerative Colitis, Pemphigus, SPS, MS, PBC, Antiphospolipid syndrome, Psoriatic Arthritis, CIDP, MMN And GPA.

Hetty58 Mon 23-Mar-20 21:05:15

I agree wholeheartedly MawB. I'm on the edge of London and the lockdown is very welcome (if a little late) here.

Alygran Mon 23-Mar-20 21:19:37

And me Maw
Ankylosing Spondylitis (my dad), lupus (my mum) and Crohns (DH) have all played a part in my family in the last 45 years.
Stay safe. Take care. 🔐❤️

grandma60 Mon 23-Mar-20 21:25:46

Oh Maw. I do know a little of what you ar feeling as my daughter is ceoliac and has Chrones. I am in awe of what your daughter is having to cope with though.
Mine works in a school so I was relieved when the school closed as she was reluctant to stay away as she felt she should be doing her bit when the school was under pressure. I xpect your daughter like mine got the NHS text this morning and was shocked that she has been told to stay home for 3 months.
Wishing you and your family the best for the coming months.

Squiffy Mon 23-Mar-20 21:27:33

And me Maw. Let’s just hope and pray that people have finally cottoned on to the implications for others.

threexnanny Mon 23-Mar-20 21:27:48

I agree too. We've friends and family with conditions named above and are horrified by the continued casual attitude of people we know in London and elsewhere.

Nanna58 Mon 23-Mar-20 21:28:39

I have PSA Maw , and am a bit frightened. X

Framilode Mon 23-Mar-20 21:30:17

I am coeliac, have Hashimotos and psoriatic arthritis as well as COPD, and to top it all my blood group is A positive.

Always look on the bright side of life.

SkyBird Mon 23-Mar-20 21:37:33

One of my son's is asthmatic and his partner is a celiac. They both work in London but are now working from home. My son has been unwell with classic Coronavirus symptoms. Fortunately he is getting better. I personally do not think that the measures go far enough. They are open to interpretation.

Nanna58 Mon 23-Mar-20 21:37:57

💐💐💐Framilode x

dragonfly46 Mon 23-Mar-20 21:43:58

I agree I welcome the lockdown.

anniezzz09 Mon 23-Mar-20 21:50:46

I don't think anyone on here is objecting, nor most folk out there. I know the autoimmune score, I have a rare immune disorder which means my cells clone instead of making proper antibodies plus asthma. The Irish side of the family is riddled with autoimmune disorders. We have to stay safe at home and hope. I feel very grateful for my home with decent garden and packed freezer.

Grannybags Mon 23-Mar-20 21:51:14

Good post Maw

My sister is in her seventies and has Rheumatoid Arthritis. I'm so worried about her

Graso Mon 23-Mar-20 22:39:47

I have PBC.

Hopefully there’s a bit of comfort for those with auto immune conditions in the following which I’ve copied and pasted from the PBC Foundation forum. It’s a response from the PBC Foundation Development Officer to a question posted by a member:

‘The good news is Italian data is saying that immuno-compromised patients tend not to get the virus so bad.

It is almost that a weakened immune response stops the spread within the lungs.

Personally, I would be using that info to reassure myself but would still be following Gov guidelines and still self-isolating’

annep1 Mon 23-Mar-20 22:44:18

Can I just add CFS/ME to the list.
I agree. People need to think of others.

Luckygirl Mon 23-Mar-20 22:46:46

Such a worry - if only we could rely on people to do the right thing. More enforcement is essential.

Doodle Mon 23-Mar-20 22:49:55

I agree too. We should all do what we can.

Marydoll Mon 23-Mar-20 22:57:23

Thanks for the post Maw and raising awareness of this. Unless you suffer from an autoimmune condition, you can have no conception of what is like or the implication it has for sufferers.

Sjogrens, Rheumatoid Arthritis, Brittle Asthma, Bronchiectasis, Hypertension and cardiac problems, a bit of a short straw for me! I've resigned myself to the final outcome.

You bet, I'm scared, especially when all these people who should be isolating, are still wandering the streets. That includes my 70 year old neighbour, who was out and about at least three times today. She thinks the rules don't apply to her. 🤬

Why on earth did the government procrastinate on this?
Talk about locking the stable door after the horse has bolted!

ElaineI Mon 23-Mar-20 23:12:56

Nursed lots of people in those categories and many people have no idea about how many people suffer from auto immune diseases - especially how young many people are when diagnosed.
DD2 not in great health so totally with you that my family will now be at home for foreseeable. Glad I have no one in London.

Mamissimo Mon 23-Mar-20 23:54:47

I and several other GNetters have HS and take biologic drugs that enable us to lead the best life we can......but they are immunosuppressive so we are anxious. I bet none of us are flouting the advice and I am utterly grateful to everyone who is giving so much to shield us as far as possible. 💐

Marydoll Tue 24-Mar-20 00:01:49

I'm supposed to start biologics on Monday, but am unable to contact anyone for advice.
The message on the rheumatology nurse specialists answer machine says they have been overwhelmed by calls for advice. ☹

Callistemon Tue 24-Mar-20 00:13:44

Well said MawBroon

Some diseases are not diagnosed for very many years leading to severe nutritional deficiencies making people far more susceptible to other diseases.

Fiachna50 Tue 24-Mar-20 00:28:10

I can assure you Hashimoto's Disease is taken seriously by no one.

Grannmarie Tue 24-Mar-20 00:53:11

Graso, thank you for the quote about the Italian data.

NannaLyn Tue 24-Mar-20 01:16:08

It was interesting to read Graso's comments about the Italian data regarding immuno - compromised patients. I have Sjogren's Syndrome and for the last 2 - 3 years have been prescribed hydroxychloroquine to control this condition. I understand this drug might help the Coronavirus symptoms. I also have Follicular Lymphoma which is being treated with chemo. (Session 8 of 8 due next Wed.) If all else fails and I do succumb to Covid19 in spite of self isolating, perhaps I won't be quite so ill.