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Lilius

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Hi everyone,I'm so glad I have found this site. I live in Lancashire in the UK and am female aged 69. I started being ill after having a total knee replacement and it becoming infected. I struggled for 6 months either in and out of hospital, either in a wheelchair without a knee or in plaster. During this time I began being unable to swallow anything but the wettest of mushy stuff or liquids. This went on for months, then they sent me home in a state of almost collapse. To cut a very long story short, 2010 I was diagnosed with Barret's Esophagus, Raynaud's and gastrointestinal problems. My life feels as though it has no meaning anymore. After eating even the smallest amount of food I am sick, I have awful reflux most of the time,and I too sleep sitting up. I have lost weight and feel totally inadequate as a human being as I am unable to do very much of anything. My own general practitioner's seem totally inadequate, and either unable or willing to find out how they can help me, and I am just passed around our local hospital. Finding this site has been like a breath of fresh air, and I intend to spend a lot of time reading other members experiences and trying to find ways to help myself through this site. I hope all you good people don't think I'm taking up too much time or space writing this, but what a relief! I would dearly like to correspond with others in the UK in a similar position. Love and light to all - Lilius.

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Hi Lilius,

 

A very warm welcome to these friendly and informative forums!

 

I'm so sorry; it sounds as if you've been having a really rotten time with your symptoms and it must have been really miserable for you. It also doesn't seem that your general practitioner and local hospital have been much help to you. One of the most important things is to be referred to a Scleroderma specialist as sadly a lot of rheumatologists just do not have the knowledge and expertise to deal with this very complex disease. I've included a link to Scleroderma specialists in the UK.

 

I am also resident in the UK and was very fortunate that the local consultant I saw realised almost straightaway that she did not have the expertise to deal with this unusual disease and referred me double quick to The Royal Brompton Hospital where I received wonderful treatment.

 

Certainly one of the things I've learned with Scleroderma is that you need to be proactive about your treatment and as knowledgable as possible about the disease. I've included links to Gastrointestinal Involvement, Raynaud's and Barrett's Esophagus which I hope you will find helpful and interesting.

 

Please don't feel that your life is no longer enjoyable; I would like to reassure you that it will be, especially now you've found our forums and joined our community. You will find that you've now made new and understanding friends who totally understand the stress and worry you're experiencing.

 

I'm very much looking forward to reading your posts and getting to know you; here's a welcome :emoticons-group-hug: (I'm the red one!)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Lilius

 

Weclome to the forums! Have you thought of asking for a referral to a scleroderma expert? They are best placed to deal with scleroderma as it's such a multi faceted disease.

 

You might also want to consider joining a local group and the Scleroderma Society UK has a group covering Lancashire and North West Yorkshire. I host the local group for Seesx and I highly recommend meeting other sclerodermians and you don't have to be a member of the Scleroderma Society to attend a local group meeting. However if you do join you can also be put in contact with other members in your area. There is nothing like talking to someone facing the same challenges that you are.

 

I have reflux and have recently increased my medication as it has got worse, I think this will be the year of ulcers and gastrointestinal problems, better than last year which was all about heart failure! Have a look at our gastrointestinal resources.

 

I look forward to getting to know you better so take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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