IS THERE ANYONE OUT THERE IN THE SUFFOLK AREA.....

[GillSuffolk]

It would be so nice to meet up with someone else who is suffering from Systemic Scleroderma with Raynaulds, feeling isolated .....

[gindy]

No I'm not in Suffolk but am usually around to chat, I get email updates when folk post on here lol.

If u need to vent just give me a holler!

Charlie.

[LucyJean]

Hi Gill, I think Tall Tim mentioned before that he is in Suffolk, and although I am in Norfolk, I am not that far away from the Suffolk border and would be happy to meet. You can also call me any time. My contact details are on the SRUK website under Local Contacts.

All my best

Lucy x

[tall-tim]

I'm sorry to hear you are feeling down.

I have Limited Scleroderma. I am near Diss. Where are you?

Here is the online link to LucyJean's contact details - sruk.co.uk/find-support/nea...

Here is my email address: [e-mail].

[gindy]

See that's what I love about this forum, there's some great help here 😃

[cleoshome]

You are definitely not alone. Mine started with hypogammaglobulinemia( no immune system) I take monthly I fusions Iv. Then Sjogrens, which will destroys your corneas, then Raynaud's I had for years, then finally SSC crest form. My heart failed in 2012. I feel like a pharmacy which I hate but necessary. I have no vein access, warm blankets wrapped prior to a test or blood draw is helpful as the disease hardens all of your tissues etc. I now have pulmonary hypertension which is tricky as my blood pressures are do low. It scares my doc. Unsure how to treat that one. Now it is scarring my skin outside. You are never alone. We are all here for you, we may just be in different stages of the disease. As a prior nurse, this is the worst disease go have short of Al's, in my opinion. As my fate personally will be the same. I am blessed everyday I just wake up, or see my daughter and my pets. You have to find your blessing everyday sometimes to make it Another day, religious if not. Also look for support group in your area. Best of luck to you . Michelle

[Bagpuss1972 in reply to cleoshome]

Hello cleoshome good on you to make the most of every day despite your various health issues. Truly inspiring for us all.

I have pulmonary hypertension and limited systemic sclerosis diagnosed just before Christmas. Had Raynauds for years but not significantly. Positivity and the love and support of family helps you get through.

[cleoshome in reply to Bagpuss1972]

Stay positive.Glad to hear you have found all of us friends. I am hopeful the meds help relieve your symptoms so you have relief. Keep us Posted. Michelle aka cleoshome

[Bagpuss1972 in reply to cleoshome]

Thanks Michelle and you take care too x

[chockers]

I come from Suffolk . But live in Norfolk since marriage .

[chockers]

Where in suffolk are you ? I come from near Halesworth but live in Norfolk now since marriage

[chockers]

Suffer from same and a bit more