Latest Activity

Joy updated their profile3 hours ago
Revenge can be very sweet... A little boy about 12 years old is walking down the street dragging a flattened frog on a string behind him. He came up to the doorstep of 'a house of ill repute' and knocked on the door. When the Madam answered i...
i was wondering does anybody know which hospitals deal with this condition in the north east thank you
Here is a list of good London hospitals. Royal Free Hospital. The Royal Brompton. If you can think of any more please feel free to add them. Please use this group for experiences that you have had at any of these hospitals.
Mrs H Pickard-Hengstenberg and Gillian mary Lomax joined UK Sarcoidosis Information & Support Group [Free Membership]13 hours ago
Gillian mary Lomax was featured16 hours ago
Rory Michael Hughes and Erica Johannessen are now friends21 hours ago
lisa mays replied to lisa mays's discussion 'memory'yesterday
thank you so much for your replys im so glad to see its not only me i have the moments too where i say the wrong word and my kids laugh and im adament i said it right and my spelling gettin worse i have started writing things down on a board in my...
Unique replied to Unique's discussion 'Nebuliser and Sarcoid'yesterday
Hi Dave, Thank you for the information, I will mention it to him next mont, The last time i asked him he did some test and will let me know on my next appointment. I will mention the medication as well. My breathing is getting worst and the coughi...
Unique replied to Unique's discussion 'having a baby'yesterday
Hi Michelle, Thank you for the information it really help and i will talk to my doctor about it again because very time i mentioned a baby she telling to think about my health. Thanks again. Regards Unique01
Julie R and Alison joined Anne Conlon Site manager's groupyesterday
Jayne Price updated their profile photoyesterday
Cheryl Green replied to lisa mays's discussion 'memory'yesterday
Hello Lisa, Your DEFINATELY not alone!!!! There have been lots of threads about this issue. I've had it quite a while, it is very frustrating to say the least. I had a brain scan which was ok, Dr has now ignored the problem. My spelling used to be...

UK Sarcoidosis Information & Support Group [Free Membership] Badge

 

Site Information - UK membership only -

We are a TOTALLY FREE OF CHARGE sarcoidosis information and support group which has been formed to help sufferers and their carers/families understand more about this little known disease. We offer free membership to those in the UK, and directly beneath this box is more information about the site. We would recommend that rather than pay for membership to other sites, donations or sponsorship be directed to the British Lung Foundation, where you can simply stipulate that you wish any payments go toward sarcoidosis research. This way you can be certain that ALL of your donation is utilised to its utmost effect and not swallowed up by administration cost etc.
Last October we had our Sarcoidosis Awareness Day where many members emailed their local MPs, Health Authorities and Government Ministers. It was so successful that the DWP now include sarcoidosis in their listings with advice about claiming DLA etc. It is now also better described within the NHS and I thank everyone who took part in this action for making sure that many of those who had never heard of this disease, now know considerably more about it


All visitors/members are advised to read the disclaimer which is at the bottom of this column.
For those who would like to make contact with either Anne Conlon or David Wright, their details are below.
ANNE CONLON - email anne-conlon@hotmail.co.uk Telephone 01263720735
DAVE WRIGHT - email david.wright1952@ntlworld.com Telephone 01612845444


Please note only the main page is available until membership is gained. Simply create a new membership in minutes which is automatically granted but is then quickly checked. Then all the site functions are accessible.
THIS SITE IS ONLY OPEN FOR MEMBERSHIP TO THOSE FROM THE UK

Welcome to our UK Sarcoidosis Information & Support Group. Here is a little information to help you navigate the site

Your site managers are Anne, Carol, Dave, Fred and Wayne who are all happy to help you with any questions you may have. Any suggestions to improve the site are welcomed. We formed this site for UK folk, to discuss matters relevant to our country. We also actively promote and provide links to other Sarcoidosis Support Groups where we can all go for further information or converse with our friends from other Countries. We want our members to participate in discussions, giving us your views, opinions, questions, replies and at the same time provide some fun and laughter. We have many features including the forum, where we invite your questions, comments and opinions. We have a Groups section where you can start or join a group of your choice. Photos: post any family, funny or scenic photos. Videos, funny, serious or home made. Chat: a great new introduction where you can chat to anyone online who wants to. Events: why not make public any event you are arranging which could be of interest to our members.Feeling a bit down and want cheering up, then have a look at the forum under "jokes or funny stories", or if you know any, just add them.
We want to make this a friendly place to come to where you feel at ease with no obligations. Just look through the site and if you want to comment on anything, then that's great because we will thrive on the involvement of our members and their input, but also, feel free to read through the postings and look for anything that may be of interest.

Forum

Dave Wright - Site Manager

JOKES OR FUNNY STORIES PAGE 134 Replies

Rude stuff is acceptable within certain limits so if your easily offended, best not look.

Started by Dave Wright - Site Manager in Uncategorized. Last reply by Dave Wright - Site Manager 8 hours ago.

lisa mays

memory 7 Replies

can some 1 tell me plzzzz if sarcoid has changes in your memory as in memory loss things all a muddle i have noticed some changes this last week or 2 and its really upsetting me and i dont see my d...

Started by lisa mays in MY STORY. Last reply by lisa mays 1 day ago.

Unique

Nebuliser and Sarcoid 2 Replies

Hi everyone, I was wondering whether using a nebuliser would work with sarcoidosis? I was asking my consultant at the respiratory department about the nebuliser, he said he'll do some tests to see...

Started by Unique in Uncategorized. Last reply by Unique 1 day ago.

Unique

having a baby 2 Replies

Hi Everyone, How are you all, hope everyone is fine. I was wondering whether sarcoidosis affect your ability to have children? because when i was diagnosed in 2003 i have put those things off beca...

Started by Unique in MY STORY. Last reply by Unique 1 day ago.

penny

holby what happened 1 Reply

Holby Can anyone tell me the results of the MRI scan from the patient with sarcoidosis. All I know is he left his wife to sulk, and his wife decided she preferred being single. Not very supportive...

Started by penny in MY STORY. Last reply by mel herbert 1 day ago.

stevielove

Swine Flu 7 Replies

I have neuro-sarcoidosis and am worried about swine flu, everyone in Britain that seems to die from it has underlying illness and am just concerned. Is there anyone out there that can ease my conc...

Started by stevielove in MY STORY. Last reply by mel herbert 1 day ago.

michelle cavanagh

Help with DLA 2 Replies

Can anybody tell me if they have received DLA as i have been turned down. Although i havent got it in my lungs i do seam to have it in most places and find it difficult for day to day living.Does a...

Started by michelle cavanagh in MY STORY. Last reply by michelle cavanagh 1 day ago.

Anne Conlon Site manager

Travel insurance 5 Replies

Hi i received this from a member and wondered if anyone can help her Hi Anne, I joined your site a while back and have found it helpful, but a bit worrying the more I find out about Sarcoid. I've ...

Started by Anne Conlon Site manager in MY STORY. Last reply by michelle cavanagh 1 day ago.

janice bovington

facial bilateral palsy 14 Replies

Does anybody have bilateral facial palsy and if so how long did it last.

Started by janice bovington in MY STORY. Last reply by janice bovington 1 Jul.

Sandra Graves

Bone Lesions

Hi All, Could anyone tell me if bone lesion are connected with sarciodosis, As I have been to the hospital today and they told me I could of fractured my capitate bone and have bone lesions. I men...

Started by Sandra Graves in MY STORY 1 Jul.

Blog Posts

Maria Lacey

Ria's story

My story begins about two years ago, with a red mark on the side of my nose and erythema nodosum, I was tested for diabeties ( I am overwieht and this is always the first thing a doctor sees)! however that was ruled out so I was reffered to the hospital for futher tests, I had a month on a steroid based cream for the mark on my nose then they tried a month on antibiotics, no change, so they did a biopsy, another month later the result was inconclusive, Red marks then appeared up my arms so anoth… Continue

Posted by Maria Lacey on 3 July 2009 at 12:13pm

Rory Michael Hughes

Tonsillitis to Sarcoidosis

Hi everyone,

I'm new to this site and have found out some things out about Sarcoidosis that other site don't tell you.

Anyway on 24th April 2009 I went to the doctors with a sore throat with suspected tonsillitis as my daughter had just had tonsillitis and in the past if I have been near anyone with tonsillitis I normally end up ill with it. The doctor (nurse) agreed that I had tonsillitis again and gave me penicillin like any other time. Over the next three days I became worse with all my lim… Continue

Posted by Rory Michael Hughes on 1 July 2009 at 4:00pm

Jayne Price

Chest Lymph Nodes

Hello Everyone
I am a new member to this site following the eventual diagnosis of my husband having Sarcoidosis of the lymph nodes in his chest. My mother spotted the piece in the TV magazine and passed the link on to me. I work within the NHS (admin) and even some my clinician colleagues knew little of the disease when I asked them about it, they all presumed it only affected the lungs. I have looked at many sites to find out more information, apart from the literature given by the Consultant,… Continue

Posted by Jayne Price on 28 June 2009 at 9:43pm — 1 Comment

Jean Lowes

My Sarcoidosis by Jean Lowes

My story starts in 1977, I was 23 and went for a medical for a new job, I had a chest exray among other things. Later I got a letter to go and see a chest specialist at Pontefract general as I was living in west yorkshire at the time. Anyway the exray I had showed my lymph glands in my chest were swollen with no reason, I was tested for TB but it was not that. Next my Doctor sent me for a test where they injected something into my arm and then 6 weeks later they biopsyed the site, he said he pre… Continue

Posted by Jean Lowes on 26 June 2009 at 6:27pm

Gordon Cambell

Sarcoid diagnosis

The good thing (if it can be called a good thing) about writing a blog of your own particular illness is that it will be read by people who are affected by the same or similar things and therefore wont judge me as being a bit of a time waster.

For a number of years now thats the way the majority of the doctors and consultants I have been under have come across to me. Over past few years I've been passed back and forth between different cardiac consultants who in there turn have not been able to… Continue

Posted by Gordon Cambell on 26 June 2009 at 1:50pm

Disclaimer - Important, please read :

This website is designed by UK Sarcoidosis Information and Support Group, for Sarcoidosis sufferers, their families, and other interested parties. We are an on-line Sarcoidosis Chat and Support Group intended for those interested in Sarcoidosis to discuss general issues of this disease and to be there for each other to offer compassion and support. We offer our experiences only; however, we are not doctors or practitioners. Therefore before you make any decisions or form any opinion you should talk to your doctor about your individual circumstances first.

The contents of the UK Sarcoidosis Information and Support Group website such as text, graphics, images, and other material, (“Content”) are for informational purposes only and do not render medical advice or professional services. The information provided through this site should not be used for diagnosing or treating any health problem or disease and it is not a substitute for professional care. The content is provided for information only. The use of all content is limited to starting a conversation with your health care provider.
UK Sarcoidosis Information and Support Group are not responsible for any injury, loss, damage or expense incurred by any individual as a result either directly or indirectly of any information published on this website. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. UK Sarcoidosis Information and Support Group disclaim any liability whatsoever for any documentation, information, programs, software, or other material which is or may become a part of this website. UK Sarcoidosis Information and Support Group do not warrant or guarantee that the information will not be offensive to any user. Users are hereby put on notice that by accessing and using this website, the user assumes the risk that the information and documentation contained in the website may be offensive and/or may not meet the needs and requirements of the user and/or may be inaccurate. If you think you may have a medical emergency, call your health care provider, doctor or emergency service immediately.

The site managers reserve the right to delete any messages that appear to be offensive or inappropriate.

Remember do not make assumptions or take chances - always talk to your doctor first.

All material on this site is copyrighted and cannot be reproduced in part or in full without the prior permission of the site creator.

We have recently had to ban a member because of repeated aggression towards others and continual foul language on the main discussions. The decision was not taken lightly but all Site Managers felt action needed to be taken to ensure the site maintains it's original friendly atmosphere. There were also frequent references to other sites offering "alternative" treatment where people were ridiculed by this person for not considering that "regime" We have seen what has happened to other sites where these types of arguments have escalated, so they will not be allowed to "take over" this site. We reserve the right to delete any topic which provokes argumentative and offensive discussion.

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DISCUSSION OF THE MARSHALL PROTOCOL

Please do NOT start any discussions regarding the MARSHALL PROTOCOL as it is now banned from this site due to members complaints.


We have recently had to ban a member because of repeated aggression towards others and continual foul language on the main discussions. The decision was not taken lightly but all Site Managers felt action needed to be taken to ensure the site maintains it's original friendly atmosphere. There were also frequent references to other sites offering "alternative" treatment where people were ridiculed by this person for not considering that "regime" We have seen what has happened to other sites where these types of arguments have escalated, so they will not be allowed to "take over" this site. We reserve the right to delete any topic which provokes argumentative and offensive discussion.
The Marshall Protocol is banned due to numerous complaints, however, if members wish to follow this regime, we suggest you join the MPs own site or if you contact me directly, I will provide links to other sites which promote or encourage discussion. Previous links to the SILA site should be disregarded as they do not allow OPEN discussion, but have permitted a "group" to be set up within their own site.

Finally, for those taking a swipe at me personally regarding the banning of the MP should realise it is not MY decision. I and the other site managers represent the majority of members and on issues such as this ONLY step in when complaints are made. The rubbish I have read on other sites stating " censorship is similar to that in China "really do show the mentaility of those obsessed with forcing their opinions on others. Dave Wright .

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