Reaching Out

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You are not alone:

 What The Regional Group can do for you


During Lupus Awareness month in October I challenged myself to write a blog a day for the cause. I hoped that by the end of the month I had maybe, just maybe informed a few more people about Lupus and given them an insight into what living with this chronic disease is like. Some people I have known for a lifetime, and some new ‘internet’ friends responded to this in amazement  and awe and many told me that until they knew me they had only heard of Lupus through the ubiquitous American hospital drama ‘House’ where Lupus has become somewhat of a joke diagnosis. Generally they asked how it was possible to keep going every day!


At my own diagnosis I have to say that I had heard of Lupus but simply had no idea of what it really meant. I had no idea also that a key to my reaching the point I am now – ‘medically stable’- (at least on the day I saw my consultant!) would be down to having a great GP and consultant, brilliant friends and family and the most wonderfully supportive husband. I know I am lucky. At some point on this ‘journey’ I sought the support of LUPUS UK; I am somewhat of an obsessive and felt that if I had this diagnosis I was going to find out as much as I could about Lupus and reach out to others who I hoped would understand- other people with Lupus!

Yes, it was a leap of faith at a time I was feeling very ill and totally lacking in confidence (don’t you find Lupus does that?!) but I saw a post in the Regional newsletter and decided I would attend a coffee and natter meeting. It felt like quite an adventure as I drove up the M1 to the Mc Arthur Glen outlet Village, not really knowing what to expect. What would the group look like? How would I know they were ‘the ones’. Having arrived at the Thornton’s coffee shop I set about finding the Lupus Group… I am quite sure people were looking at me strangely, wondering why I was looking so intently at groups of more than two! My lasting memory is of a white haired man asking ‘Lupus?’ to which I said ‘Yes!’. How did he know? I was not carrying a copy of the Times with a yellow rose in my button hole!   It was not written across my forehead nor did I carry a notice! Apparently I had the ‘look’! I now have insight, knowledge and some new friends.

The man in question was Brian Kimberly (who was the regional Chair and now compiles the newsletter) and I was given a very warm welcome. The group had a lively conversation comparing symptoms and medications, the road to diagnosis and life stories! All shared with a great deal of humour and no sense of anyone feeling sorry for themselves. I no longer felt alone. I came away having promised I would make a Facebook page for the regional group as I felt this would be available to some members and sufferers who were otherwise not reached. The power of social media!

I am now a committee member having been elected at the AGM last year. I remain responsible for the Facebook page. I have attended one committee meeting since then, unfortunately missed one due to my health and will be attending the next one prior to the AGM due sometime around Easter.  I have been to several coffee and natter groups! The committee is the local branch of Lupus UK and our work is very simple. We are there to spread the word, provide information and to support people. We try to get up to date information out to the hospitals with Rheumatology departments and take the information stand out when possible. Local members who fund raise can do so through the group. Some regional groups are more active than others and are able to organise larger events such as the Information Day/Conference by the East Anglia Lupus Group.

To finish I am appealing to you our members. The regional group can only exist through the support of its members- YOU! The commitment to being on the committee is small, the rewards are great. The more people who are involved the easier the job. Maybe you have a skill, knowledge or a small amount of time you can contribute? Contacts are at the end of the newsletter or through the Facebook page and website.







Author: onoodlesstitchcraft

An erstwhile teacher who has taken a new path due to illness and returned to an earlier existence exploring her artistic and creative skills of stitchcraft. My oldest son laughs and says I am as mad as a spoon, qualifying the comment that I am not like other middle aged mothers... well hurrah for that! So what do I do? I love to cook, I am never without a craft project or a few on the go, I love my garden, walking, nature and the environment. I am a magpie for vintage patterns and love colour. I get pleasure from creating and giving to friends. I have a rabbit! I ride a bike and recycle... Drink too much tea and like nothing better than to lunch with friends. Snuggling up on cold winter nights is essential. I like the theatre; musicals and dance in particular. Amongst my favourite films are Seven Brides for Seven Brothers, Singing in the Rain and Fried Green Tomatoes. I love to read anything from Crime thrillers to classics (love Wuthering Heights) or biographies about inspirational people. I hate sexism or racism and disingenuous people. I value friendship and above all else my family.

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