RAISING awareness!!: see what i did... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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RAISING awareness!!

littlemissshy profile image
17 Replies

see what i did there? haha.

anyway, i recently emailed my biology teacher (im not confident...AT ALL) and the result of asking him to give a lesson to the class, is a whole year nine assembly! they mentioned being accepted, for hair colour, this other swelling thing (the name has slipped my mind) and finally raynauds. they said quite a bit about raynauds, what it is, how it can be treated, who has it and she also mentioned how to prevent it. then she said there are some students and teachers (?? not sure who...) in the school who have it and you will probably see them wearing gloves, at that point according to my friend who sat next to me, i slid down in my chair lower and lower, everyone was looking! and im not one looking for attention!! then i started saying dont look at me dont look at me,, under my breath haha. its quite funny now come to think of it :-D

but my point is, to those who are like me and are still in school, feeling selfconcious is bad enough, but with raynauds and other complications too? dont be afraid to speak out, raise awareness and tell someone about it. its made my life so much easier and its only a day later (touch wood bla bla bla)

so the key thing is, SPEAK OUT!! dont be afraid! email, write or talk face to face with someone about it, even if you do what i did, it makes a difference, not just to me in my case, but you guys too, because if we all did this, eventually loads of people will know about the condition. i'm always here to talk with ANYONE at ANYTIME (although im busy sometimes :-P )

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littlemissshy
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17 Replies
zenabb profile image
zenabb

That is one great message. Thank you.

zenabb profile image
zenabb

I want to add to my reply a minute ago. Please tell this story to the Raynaud and Scleroderma Association to publish in their publication "Hot News".

littlemissshy profile image
littlemissshy in reply to zenabb

sure thing, i will now!!

littlemissshy profile image
littlemissshy in reply to zenabb

sorry but how???

zenabb profile image
zenabb in reply to littlemissshy

Get onto their website Raynaud and Scleroderma Association on the internet, and tell them.

littlemissshy profile image
littlemissshy in reply to zenabb

thats great thanks!

Skwiglee profile image
Skwiglee

Well done you, I'm so pleased for you! It may be a horrible illness to deal with. But, I reckon it will improve your self confidence! There are easier ways I know!! :D

wartsandall profile image
wartsandall

Hi littlemissshy.......well done !!!!....I'm so proud of you !!!!.....Zenabb is right, you need to share your experiences and what you achieved with members of the raynauds and scleroderma association.........write to them, or give them a ring, I'm sure they will be very interested in publishing your story,..... you go girl xx take it easy xx

Bee346 profile image
Bee346

As an OAP and having been told all my life by well meaning friends & medics that I'm making a fuss, I am in total admiration of you littlemissshy.... sincerely, I feel so many of my generation can learn a lesson from you. Stand proud young lady... you really should be. Thank you for 'flying the flag' of Awareness.. x

littlemissshy profile image
littlemissshy in reply to Bee346

thanks!!

toftsie profile image
toftsie

Fantastic young lady - well done. I am sure if you contact the RSA - info@raynauds.org.uk they would be more than willing to send you an Awareness Pack for you to display at school and get a few more folks understanding the condition. Well done you. x

littlemissshy profile image
littlemissshy

thanks all, i hope it helps... also how would i 'share my story?' who would i email?

wartsandall profile image
wartsandall

Hi littlemissshy.......ring the raynauds and scleroderma association on...01270 872776......or you can email them on... : info@raynauds.org.uk............the association has a lot of young people who are members, who are involved with the RSA ( raynauds & scleroderma association )....the young members have activity weekends that I'm sure you would enjoy....it will be a perfect opportunity for you to meet other young members and find yourself new friends who have similar experiences to you............telephone or email the RSA and you will find a kind voice who will listen and offer you lots of helpful information.......good luck and keep us up to date with your journey...big hugs xx

littlemissshy profile image
littlemissshy in reply to wartsandall

thats great thanks!!

Hi littlemissshy, have they come back to you yet? You must let us all know.

littlemissshy profile image
littlemissshy in reply to

The RSA? yes, but all they said was, do you want an info pack, hey ho, all well....

graygirl1 profile image
graygirl1

Hi there. There is no shame in having a medical condition. Tell your friends as much as you can about it. You can get lots of information from the Raynaud's and Scleroderma Association on the internet and through leaflets which you can obtain from themselves. Introduce them to this forum. This is a wonderful place to come to learn more. Raynaud's is a very complex condition but eventually you will find ways to manage your symptoms. What works for one person doesn't always work for another.

I knew very little about Raynaud's until I was diagnosed and other people are the same. I had no idea so many people suffered with this until I stumbled upon this forum via the RSA website. Until we are affected by something we have no understanding of whatever it may be.

If your school mates make light of the difficulties you face each day, try not to let it get you down. We are never too young or too old to develop an illnesses and at any time. Illness is no respecter of person, rich or poor, black or white, royalty or commoner, male or female.There but for the Grace of God go some of us!

Take care good care of yourself and keep as warm as possible. Happy New year to you and all the RSA "family"

Graygirl1

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