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summer

TV Documentary including Scleroderma

18 posts in this topic

I'm not too sure, whether I am allowed to post this.

 

Next Tuesday on an SBS one channel on television at 8.30pm, Melbourne time, there is a documentary on TV.

 

It is about 3 terminally ill people, who have basically, been diagnosed with different diseases. One of them is a young lady, with children, who is diagnosed with Diffused Systemic Sclerosis, (Scleroderma).

 

That is basically all I know about this program, but what I can gather by the adverts on tv, it is a sad story, so It may not be suitable for some people, who have just been diagnosed.

 

If anyone requires anymore information, they can PM me.

 

Many thanks

Summer

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Thanks for posting this, Summer. It will be interesting to hear what the reactions to the show are, from folks in the Melbourne area. Everyone should bear in mind that there are many different types of scleroderma and that it affects everyone differently. Generally speaking, the very worst cases make for the most drama and thus are the cases that are publicized the most.

 

So, kleenex alert to all (just in case) and if you are newly diagnosed, either avoid it or watch it with someone who will help you keep in mind that the show is about raising awareness (which helps all of us) and very probably far worse than anything you'll ever experience yourself.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Hi Summer.

 

Thank you for alerting us about this programme. SBS have wonderful documentaries and as Shelley has pointed out it will raise awareness.

 

I will let as many of my connections know about this and they can "choose" to watch if they wish. I for one will be very interested in the treatment being offered for a start.

 

Thanks again Summer

Robyn

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Hello All

 

The programme is called "Living the End" and features a 25 year old woman with diffuse scleroderma with pulmonary fibrosis, a 50 year old man with cancer and a 79 year old man also with cancer. Sorry to spoil the end but the two men die and the lady has a stem cell transplant. I went onto the SBS website and it seems the focus of the documentary is actually a positive one even thought it is ultimately about dying.

 

Hopefully I can watch it online as I'd like to see it with hankies at the ready of course.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thanks for telling us the end Amanda, there is no need for me to watch it now. It's like, picking up a novel to read, but someone tells you the end of the story, before you read it. :temper-tantrum:

 

Summer

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Oh my giddy aunt!! Woe is me people...I have become my mother!! Many, many years ago my sister wanted to read Tess of the D'urbervilles and finally had the book to read, unfortunately Ma read it first and said to my sister "You know she dies in the end..." :emoticon-bang-head: Sorry Summer!


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thanks so much for highlighting this story!

 

I searched on "Living the End" and "SBS" and read the synopsis - it's an incredibly positive story for scleroderma at least.

 

After the stem-cell transplant, the lady with diffused systemic scleroderma went from a 90% chance of early death to a 70% chance of survival!

 

Can't wait to see it! :)

 

Colin

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Hi All,

 

Thanks to this forum I feel that I can now recommend it to some of our members. The statistic that Colin mentioned certainly gives hope to many.

 

So tonight at 8:30 I will be watching, so I hope no-one expects me to answer the phone!

 

Robyn

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I watched the documentary last night on SBS. I was disappointed that they didn't go into more depth about the lady with scleroderma. They barely touched the surface.

 

I don't know whether it was me, but I found that there was more coverage on the other two cancer patients, then the lady with Diffuse Scleroderma.

 

I'm interested to know, what others thought of it.

 

Summer :VeryHappy:

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Hi Summer and all,

 

Yes, I agree. They certainly spent more time with the men. Unfortunately when Katie said what she had you would not have understood the name if you were not familiar with the term systemic diffuse scleroderma. It was very quick and hardly audible.

 

I felt that the programme was certainly about the journey. The highlighting of the different way's we deal with the certain knowledge that time is running out. They did follow only one of the men to the doctors surgery where he was told how his condition was progressing.

 

Maybe those treating Katie were unwilling to be involved with the documentary. I was wondering if Scleroderma Australia could get in touch with the Director and see if a follow up of Katie's story could be made.

 

On the whole I thought it was a very tastefully produced programme. I didn't feel that I was being intrusive into these people's very private life, that they were more than willing to share.

 

But Summer, yes, you were right. It did not raise the profile of scleroderma to any great extent.

 

Warm wishes,

Robyn

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Hi Everyone,

 

So sorry you felt a "let down" from a documentary that had an opportunity to better educate the public, with regard to Scleroderma.

 

I really believe that when an orphan disease, such as Scleroderma, is brought out, more should be revealed...for sure.

The way this particular documentary was done, it's like showing an ice cream cone, but not revealing the flavor :emoticon-bang-head:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi All,

It is my intention to contact the director of this documentary to see if she will do another story, hopefully following Katie and exposing scleroderma this time.

 

We can only try.

 

Kindest regards to all,

Robyn

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Hi Everyone

 

Thanks for the warm welcome Jo and Amanda :)

 

I was recently diagnosed with scleroderma by my dermatologist, but I'm still waiting for blood tests to confirm this diagnosis and also to figure out what type I have.

 

I agree that the show didn't have much on scleroderma, but one thing I did like was the hope that stem cell treatment may offer some kind of remission. Does anyone know much about this?

 

It would be interesting if they had a follow-up to see how Katie goes. I hope she'll be alright. I hope we'll all be OK somehow.

 

Colin

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Hello Colin,

 

Welcome to the ISN sub forum for Australia. Glad you found your way here so quickly!

 

Scleroderma Victoria are holding a seminar on the 30th April in Melbourne. I will post a new topic with this information for you.

 

I hope your diagnosis did not take too long to be discovered. Lately our members have reported that the medical practitioners in Melbourne have been very quick to recognise the symptoms, which has been a long time in coming.

 

Look forward to hearing more from you regarding your progress. We are here for you

 

Robyn

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Hello Colin

 

Please see our stem cell transplant resources which includes personal stories about the procedure.

 

If your diagnosis is one of the systemic forms of the disease you may want to consider seeing a scleroderma expert.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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