Thought I'd post about the Scleroderm... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Thought I'd post about the Scleroderma News newsletter from U.S.

Sophiebun11 profile image

sclerodermanews.com/newly-d...

I wasn't sure if everyone was aware of this newsletter. It has a lot of good articles on Sclero/Raynauds/and other autoimmune diseases. This one has some items about treatments. I found it recently and received the past 2 issues which I read thoroughly and learned a lot.

11 Replies

Thank you for the link 😊

Thank you.

Thank you for the link. Very informative. I have subscribed to their newsletter thanks to you. All the best. Keep well. Linda

I'm glad you signed up. They do have good info!

I find it very informative and good to hear what’s happening in the USA re Scleroderma, as with SRUK.

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

We all have more similarities than differences wherever we are!! I enjoy the personal accounts in the newsletter.

Bkart profile image
Bkart in reply to Sophiebun11

Hi You replied recently re my Kidney issue, turns out not to be my kidneys but problem with my liver. However I looked at the kidney forum which you suggested and noticed you had posted a brilliant post about showering. So funny and true, glad I’m not the

only one who feels like this!

Just wondering if you could post this on the Scleroderma forum as well, cheer us all up, or is it already on here somewhere. LOL 😂🐾

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

Hi,

I guess you mean the showering chair cartoon. I'll try to remember to do that later today when I get back from errands. I'll start a new thread rather than adding it to this reply.

I wrote a really funny one about how I got stuck in my holiday candy cane print compression socks and it took me 15 minutes to get each one off and I almost had to use a pair of scissors. It turned into a very long hilarious thread as others with kidney disease shared their similar stories. Ankle edema is a problem with kidneys.

Well, I'm sorry to hear you are now having liver problems. Is that related to autoimmune? I know it can be. It's always something isn't it? I hope there is something to be done about it. Are you getting a referral to a hepatologist? Not to be confused with a herpetologist as I realize you aren't a reptile LOL!!!

The HU Raynauds and Scleroderma Forum seems pretty slow. There is a much busier one on Inspire.com in the US. They have a forum for many ailments.

Best of luck to you with your liver issue. Keep me posted.

Have a good holiday even if it's just staying in bed in your warm flannel jammies with your pets. That's my plan.

Bkart profile image
Bkart in reply to Sophiebun11

Hi, my GP is monitoring the liver thing over the next three months, not sure if SSC can affect the liver it’s all quite new to me, not going to worry though. Think the skin on my legs is beginning to look like a reptiles, the herpetologist might be worth considering! lol 😂

Have a good Christmas too, the idea of staying in bed and letting the world pass by sounds great.

Two snoring dachshunds on my lap right now.

Looking forward to hearing the sock story as well

if your not too unwell or tired.

Must admit it takes me ages to find all the different posts. Take care.

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

LOL you are too funny about the herpetologist for your legs!!!

I got some new Christmas thick flannel pajamas with different breeds of dogs on them. Some have dachshunds wearing little hats, scarves and sweaters. Here's the Amazon.com link if you want to get some.

amazon.com/dp/B09CP8N7Y5/re...

and this pic is just for you, it is too perfect for your lizard legs comment LOL

dry skin
Bkart profile image
Bkart in reply to Sophiebun11

Thanks for the laugh, seeing this I think my face is getting there too 🙈😬 😂!

The pj’s are great, look really good quality, unfortunately they came up out of stock here but will keep looking to see if they come back into stock again. Again, thanks for the link.

It’s so good to be able to smile in adversity, I so love your sense of humour.

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