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Shows: 23208.
Inputs: 218.
Last show: Mon Dec 1 17:03:35 2008
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Last input: Sat Nov 29 16:41:57 2008
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Name: Nakisha Edwards
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| Country: Unites Kingdom |
Date: Sat Nov 29 16:41:57 2008
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Comment: HELLO EVERYONE. IM ONLY 20 AND I HAVE HAD SCLERODERMA FOR ROUGHLY 11YEARS. WHEN I FIRTS GOT DIAGNOSED I WAS THE YOUNGEST PERSON ALOT OF THE DOCTORS HAD TREATED. GROWING UP WITH IT HAS BEEN CHALLENGING BUT BECUASE I HAVE NEVER EXPERIENCED LIFE WITHOUT IT- I FEEL AS THOUGH I HAVE NEVER LIVED MY LIFE TO THE FULLEST.
TO ALL OF THOSE SUFFERING- I SAY STAY STRONG AND CHANNEL YOUR INHIBITATIONS TO SOMETHING PRODUCTIVE! AN MOSTLY- STAY POSITIVE!!!!
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Name: jean barker
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| Country: uk/durham |
Date: Mon Nov 24 16:12:48 2008
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Comment: Hi everyone,iav just been told that scleroderma is now affecting my gut,i am in a lot of pain and finding it hard to walk due to the cramps,i am unable to digest my food,god how i hate this illness.i envy you who have plataued,mine is still progressing so i don't hold out much hope for me.i wish every sufferer the best of wishes and hope you will be luckier than i have.
all the best every one
jean
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Name: Amanda Thorpe
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| Country: United Kingdom |
Date: Sat Nov 22 00:08:57 2008
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Comment: Scleroderma greetings!
Lynne congrats on finally plateauing (spelling?). You are right a positive at***ude and pacing yourself help in the management of this disease tremendously. There's life, good life, to be had after scleroderma...it's just different to what you though it would be!
...it's my disease and I'll cry if I want too...
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Name: Lynn
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| Country: england |
Date: Wed Nov 19 16:57:20 2008
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Comment: that was suppose to read VIAGRA !!
lYNN
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Name: lynn
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| Country: england |
Date: Wed Nov 19 16:56:05 2008
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Comment: Hello, I have had sclerodrma ( diffuse) for 7 years now and finally it is plateaued !! I am currently using Viagrs ( sindefinal) for the raynaulds, has anyone had any experience using this drug and if so did u find it beneficial and were there any side effects ..
Thanks all
take care all of you. and one tip i have found has helped get rhough this is to remain as positive as possible and pacing myself
Lynn
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Name: carl sawbridge
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| Country: uk |
Date: Mon Nov 17 12:57:42 2008
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Comment: hi all,i only found out id got scleroderma 7 weeks ago and im stugging just a bit to come to terms with it,has anyone any tips on dealing with the finger ulsers and the pain that gos with it.cheers,i hope to get more involved over the coming months,thanks again
carl
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Name: Penny Wheeler
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| Country: England |
Date: Sun Nov 16 18:46:40 2008
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Comment: Hi,I am suffering from Systemic sclerosis which has caused pulmonary fibrosis and have just been told I only have 40% lung capacity left. I feel like I'm the only person with this disease in Derbyshire as I've never met anyone else who suffers with this and no-one else understands what it's like. Is there anyone else in my area that I could talk to and compare symptoms etc.? It would be such a relief to find someone else to talk to.
Thanks in hope that someone is out there...
Penny
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Name: JEAN BARKER
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| Country: uk durham |
Date: Fri Nov 14 19:37:24 2008
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Comment: hi i have suffered with systemic scleroderma for 12yrs.this is the first time i have found this site.i am very down at the moment and would love to talk to anyone in my area or in this country who have the same condition i also have raynauds.
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Name: amanda thorpe
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| Country: UK |
Date: Sun Nov 9 23:36:49 2008
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Comment: Richard, I have diffuse systemic sclerosis and am in receipt of disability living allowance(includes carers allowance)and incapacity benefit. Apply for it sooner rather than later as it can take time.
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Name: richard
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| Country: england |
Date: Fri Oct 31 22:47:38 2008
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Comment: Hi everyone Ihave systemic scleroderma does anyone know if you can get disability for this I have had infusions but I dont seem to see any improvement I dont know any one with this My own doctors know nothing It would be a help to speak to anyone who has this or any group I could join around yorkshire
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