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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 CFMBabs

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Posted 15 February 2007 - 10:28 PM

February is The Raynauds and Scleroderma Association Awareness month in the UK (which is a longstanding member of the ISN's Scleroderma Webmaster's Association.)

To contribute to the cause I'm to be interviewed by our local radio station on the 21st (Wed). This will be my first live interview talking about Raynauds, it's effects and symptoms. Scleroderma will be mentioned but I don't want to scare people into thinking that if they have Raynauds they will develop Scleroderma. I'm currently writing on scraps of paper delicately approaching the subject with caution.

I've written quite a lot about the two conditions recently. I'm a member of another organisation dealing with people on enteral feeding. I wrote a piece which appeared in their magazine and currently I'm on their website too with a blog not unlike the one I have on this website. I'm trying to highlight the conditions so that more people are aware of the symptoms and indeed get help if they think they may have Raynauds. It's all about fundraising too and I know that there are currently some exciting new treatments available although no cure as yet been found.

I'll write a piece on my blog when I've done the interview and update you on the response -- it could be quite interesting.

Wish me luck!

Good health to all

Barbs ( Barbara Lowe )

#2 Claudia-DR

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Posted 16 February 2007 - 05:54 AM

Barbs, what you're doing is just great. It's so important to create awareness about Raynauds.

You know, if I would have gotten checked by a Dr. when my Raynauds started, maybe the sclero wouldn't even had stood a chance of becoming activated.

Congratulations on your effort!

Best,

Claudia

#3 Sweet

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Posted 16 February 2007 - 06:52 AM

Barb

How exciting! I'm proud of you for doing this! Wish I could listen.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 ShawMJ

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Posted 16 February 2007 - 07:31 PM

Hey Barbs that is some news I wish you the best with your interview and glad that you're helping people understand about these things.Back in 1998 when I was first diagnosed I did a TV interview,and I think it came out okay but I was so nervous! It was a young woman that did the interview and she was really pleasant about the whole thing.However I wouldn't do it again.Once was enough! It did do some good though as I had so many people tell me they had never heard of it until they saw the interview.So I guess it did help enlighten some people.I hope you're doing well and that the geese are behaving.Did the one from across ever come back or is it still 'missing in action'? Take care of yourself and keep on with the blogs they're really fun to read.Smiles and hugs Mary-La.

#5 CFMBabs

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Posted 16 February 2007 - 10:36 PM

Wow! going live on TV is something else -- I don't think I'd be brave enough for that!
Thanks for all your best wishes and I really hope I can do this! I've written so much about it but never discussed it in a live interview. I've been on the radio some years ago when I had my business but it was a quiz that ran for about a week. I think I came across okay on that occasion but this is entirely different.
Yes! my goose came back but hey come and go! It's quite amusing watching them home in on me when I shout no matter where they are. The gander is the main problem at the moment as the geese are beginning to lay again and he's being very protective. We awoke this morning to screams from the poor postman who was being chased down the drive by the gander -- pity I didn't have my camera or am I being too harsh?

Best wishes to you all
Love always
Barbs xxx

#6 giorgigirl

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Posted 17 February 2007 - 05:43 AM

Hi Barbara,
sounds great and I wish you the best of luck.......when are you on and what station......are you doing a slot on radio4 or is it local radio......Im from the UK and would like to tune in

sincere regards

giorgigirl

#7 giorgigirl

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Posted 17 February 2007 - 05:46 AM

oh dear, Im doing it again!!!!!!, I have just re read your story and see you have already answered my question.....yikes, does scleroderma effect brain functioning? I really am beginning to wonder cos I keep making silly mistakes like this..lol

Anyhows best of luck once again

Giorgigirl

#8 sadie20

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Posted 17 February 2007 - 06:14 AM

Barbara,
How cool!! Education of Raynauds, Sclero is the key. I wish I could listen.

#9 CFMBabs

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Posted 18 February 2007 - 06:01 AM

I wish there was a way that you could all hear the interview -- at least I'd get a true opinion of my performance but of course it isn't about that at all!
I have to be very careful what I say, I'm never serious but on this occasion I will have to be on my very best behaviour. My husband cracked me up with a statement he came out with about Viagra but for fear of my membership on the board, I dare not repeat it. I'll probably be bursting to laugh if the drug gets mentioned and I'll have to be very professional!
Getting nervous but looking forward to it all the same.

Good health to all
Barbs xxx

#10 emmie

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Posted 18 February 2007 - 05:03 PM

Barbs,

Do they know how lucky they are to have you as a speaker?? You'll do wonderful! And let a bit of your wonderful humor peek out. That always makes people listen even closer because you seem more real and "human". You will be superb!

xoxo emmie

#11 janey

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Posted 18 February 2007 - 06:00 PM

Barbs,
You are the last person that should be worried about what to say. You have a beautiful way with words and always put a lot of thought into what you do say. With your years of experience with Raynaud's, focusing on just it won't be hard for you - you'll do great!
I too wish there were a way for all of us to hear the interview. What a great thing you're doing! Can't wait to hear how it goes.
Big Hugs,
Janey

#12 CFMBabs

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Posted 18 February 2007 - 09:30 PM

I just want to say how great you guys are! When my confidence wains a little I know I can rely on you all to boost me up again --- What a wonderful lot you are and if I can get my message across with all of you in mind, I'm sure someone out there will listen.
I'm returning a huge favor to the Raynauds and Scleroderma Association -- and you guys of course!
When I spent the best part of two years in hospital, friends from the Association came to see me every single day. I was in Manchester and far away from home. No one, including some nurses knew about my condition and without my friends help I wouldn't have got all that I needed. The hospital staff were wonderful but I never liked to trouble them for anything. My pillows were way too low and not enough. My friends came and soon sorted that out, they even got the specialist nurse to visit me. So you see, I don't want any praise for speaking about Raynauds I just want other people to realise that having this condition can make you feel alone and misunderstood.
There are 10 million people in the UK alone with Raynauds -- how many are there still out there in the wilderness -- coping with more than just a nuisance --How many people out there don't realise there is a name for that condition that makes their fingers go numb -- how many know there is help! And how many realise that there could be an underlying condition and how important it is to have a proper diagnosis.
If there are 10 million people in such a small country like ours -- how many more are there in the US or other parts of the world. We have to bring this condition to the forefront and make the medical profession sit up and listen to us, It's not just a nuisance -- it's painful, dibilitating and we spend more money on heating the home than any normal person. It takes over your life and your state of mind -- ruins your day out, ruins your capacity to live a normal life. It's not just a nuisance, having a bad hair day is a nuisance, it's much more than that.
I talk about Raynauds and sclero as much as I can without sounding pityful. I write about it whenever and wherever possible. Together we can all make a difference and that difference is beginning to show. There are new and exciting treatments becoming available but if we become complacent that's all we're gonna get folks. Lets shout it out and take all on board, majority rules.
Okay I'll get off my soap box but thank you all for your support.

Best wishes
Barbs xx

#13 nan

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Posted 19 February 2007 - 04:36 AM

Barbs,
You will do an excellent job! I love your BLOGS. They make me laugh. :D I just told my husband the other night that I wanted to meet you and your geese. The farmhouse you're renovating looks awesome! Take care and keep up the good work!
Nan

#14 Steve

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Posted 19 February 2007 - 07:26 AM

Hi Barbs. Well done for agreeing to be a spokesperson on the radio. We all have great faith in you and know you'll represent all us with this condition brilliantly.
Take Care,

Steve Dickson
ISN Assistant News Guide for RSS Newsfeed
International Scleroderma Network (ISN)

#15 Heidi

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Posted 19 February 2007 - 07:36 AM

Hi Barbs,

All I can do is ditto what everyone else has already said.....you are going to do marvelously! And don't reign in that wonderful sense of humor of yours too much! I too love reading your blogs and really admire your gift for laughter! You will be in my thoughts on Wednesday and I can't wait to hear how it goes.

Warm wishes,
Heidi

#16 kelowna52

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Posted 19 February 2007 - 12:13 PM

Hi Barbs, I'm sure you will be incredible, you have such a positive and humorous way of looking at things. Good luck to you.

Jackie S.