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Biomarker for Diffuse Scleroderma skin has been discovered!


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Hair Loss


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#1 Sandy B

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Posted 11 August 2012 - 11:55 PM

Hi All,

Well it had to happen, all my hair has dropped out after radiotherapy. I had hoped it would just thin a little, but I guess I have to look at it as it's buying me a little bit of more time. I'm feeling very tired and breathless at the moment, again side effects of the radiotherapy, but no seizures which is good. Still managing to get out and about with the aid of a wheelchair, so days out planned with the family and a huge family BBQ next weekend, so will keep you posted.

Regards

Sandy B

#2 judyt

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Posted 12 August 2012 - 04:16 AM

Hi Sandy,
You seem to be managing very well, with good posts coming up from you every few days. Keep up the good work, it is nice to hear from you. It looks from here as though the summer has settled in your part of the world and we all hope you can make the most of it.

Best wishes,
Judyt

#3 Joelf

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Posted 12 August 2012 - 05:01 AM

Hi Sandy,

I'm so sorry to hear about your hair loss; I think that's one of my main fears.

However, as you say, you're able to get out and about and at least we do seem to be having some decent weather for a change which might last until next weekend, so I hope that your BBQ is a roaring success......forgive the pun!!! ;)

Best wishes,

Jo Frowde
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#4 Amanda Thorpe

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Posted 12 August 2012 - 12:39 PM

Hello Sandy

I am sorry your hair's deserted you, are you opting for wigs or hats?

I hope you have a great BBQ with your family, maybe share some photos with us on the SSUK photo gallery?

Take care and enjoy yourself whenever you can.
Amanda Thorpe
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#5 Vanessa

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Posted 17 August 2012 - 12:26 PM

Hi Sandy,

I have just popped by after a very long absence and wanted to say I'm sorry that you have had such a lot of challenging stuff going on though I am totally in awe of your wonderful way of dealing with everything.

About the hair. It's a real bummer. I had chemo last year and had a similar follicular challenge. I was given a wig but have to say it was a waste as I only wore it once and even though it was a discreet looking one I felt very conspicuous. And it was ITCHY.

A lovely soft t.shirts material thing called a durag was much easier to get along with.

I hope you make it to the barbeque at the weekend. Take it gently.

#6 rubydoo

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Posted 17 August 2012 - 01:21 PM

Dear Sandy,

If I was you I would treat myself to a glorious Marilyn Monroe type wig and pose for the cameras. Hope you have a good weekend and the sun shines on your B-B-Q.

Take care,

Helen

#7 Shelley Ensz

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Posted 17 August 2012 - 01:36 PM

Hi Sandy,

I'm sorry you lost your hair due to the treatment. I am impressed with your attitude of, "I guess I have to look at it as it's buying me a little bit of more time." Looking on the up side of things does help us deal with the down side, doesn't it?

What is your plan of attack, a wig, a durag, a big hat, or just plain au naturale? Regardless, I hope that your BBQ is delightful, and that you will be feeling a tad better soon. I am sending extra warm hugs your way.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#8 Amanda Thorpe

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Posted 18 August 2012 - 05:53 AM

Hey Sandy, what about going au naturale as Shelley suggested but with a tattoo? A sclero.org tattoo? I watched a cooking programme and a lady had shaved her head in honour of her friend, a 20 year breast cancer survivour, and also had a relevant tattoo on her head and it made me think of your hair loss issue.

Take care.
Amanda Thorpe
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#9 Joelf

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Posted 18 August 2012 - 06:47 AM

Hi Sandy,

Hair or no hair you've certainly got fabulous weather for your BBQ!!! :emoticons-yes:

Have a wonderful time with your family!! :emoticons-line-dance:

Kind regards,

Jo Frowde
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#10 Sandy B

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Posted 19 August 2012 - 04:16 AM

Hi all,

Well round the house and with my family and friends I'm quite happy to go au naturale, I haven't got a problem with the way I look, having lost my hair last year, I got used to it. But when I am out I have to cover up, especially if it is sunny because the scalp is extra sensitive.

We had a fantastic day yesterday, the BBQ went really well and the weather was fantastic and I ate like a horse, which is down to the steroids which I'm on, so funnily enough I look really healthy at the moment!!! Tomorrow we have a day planned out with the family, we're taking my granddaughter to a Wildlife Park, which I'm really looking forward to and my sons are coming along too, as well as daughter, so should be another good day.

In a week's time we are off to Norfolk to visit Kev's family, which will mean several days out, so that will be another week to look forward.

Just been awarded Disability Living Allowance, which is a relief and now we can apply for carers allowance, so hopefully we will get that too. It only took three weeks for the DLA to come through under special circumstances, which is the terminal side of things, but it is one less worry for us.

Hope you are all enjoying the sunshine and keeping as well as can be expected.

Regards

Sandy B

#11 Joelf

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Posted 19 August 2012 - 06:32 AM

Hi Sandy,

I'm so pleased to hear that your BBQ went well; you were so lucky with the weather! ;) Steroids do tend to increase your appetite as I can verify!

I had a look at the weather forecast where you are and it looks promising again for tomorrow, so I hope you have a lovely time with your family at the Wildlife Park.

That's very good news about the DLA and I'm glad they pulled the stops out so that you were able to receive it sooner rather than later and I hope your claim for Carers Allowance goes through equally speedily and easily.

My best wishes to you,

Jo Frowde
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#12 Amanda Thorpe

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Posted 19 August 2012 - 11:52 AM

Hello Sandy

Glad you enjoyed your day and got your DLA. Get all the financial help you can. If you're a member of the Scleroderma Society don't forget you can apply to the Assistance Fund for help with expenses arising from having scleroderma and I am sure you must have some?

Take care.
Amanda Thorpe
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#13 Vanessa

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Posted 20 August 2012 - 06:55 AM

Hi Sandy
I am so pleased that you were able to make the BBQ and that you received the DLA
You are an inspiration.
Sending you a hug.
Vanessa

#14 Amanda Thorpe

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Posted 20 August 2012 - 07:34 AM

Hello Vanessa

I would also like to point out what an inspiration you are. Surviving renal crisis and then breast cancer requiring not only chemotherapy but a radical mastectomy and yet, here you are, encouraging others!

:bravo: to you Vanessa! :bravo:

Take care.
Amanda Thorpe
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#15 Joelf

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Posted 20 August 2012 - 01:03 PM

Hi Vanessa,

I would also like to point out what an inspiration you are. Surviving renal crisis and then breast cancer requiring not only chemotherapy but a radical mastectomy and yet, here you are, encouraging others!

:bravo: to you Vanessa! :bravo:

Take care.


Hear, Hear, from me too Vanessa!! :you-rock:

I echo Amanda's sentiments exactly!!! :emoticons-yes:

Kind regards,

Jo Frowde
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#16 Sandy B

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Posted 20 August 2012 - 11:32 PM

Hi Vanessa,

I have to second and third that motion, radical surgery is such a major thing to go through and the fact that you are here and still able to give support to others is fantastic.

Regards

Sandy B

#17 Vanessa

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Posted 26 August 2012 - 08:24 AM

Thank you girls.

This scleroderma rotter puts us to the test that's for sure.