INTERNATIONAL SPS PATIENT PANEL, PART ONE
ฝัง
- เผยแพร่เมื่อ 18 มิ.ย. 2024
- From across the world, four Stiff Person Syndrome (SPS) patients and a dedicated and passionate mediator advocate to empower the media with more SPS facts. Here, we discuss the exclusive interview given by Celine Dion with Hoda Kotb about her SPS diagnosis.
We share our personal SPS journeys and battles so a larger range of experiences can hopefully help educate the public.
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A phenomenal discussion. I applaud you for speaking so brutally honestly about each of your journeys. Looking forward to the next panel, post-documentary.
Thank you for your message, all four of us are grateful 💕💕💕
This is such an important discussion. I appreciate hearing your stories. I couldn't get out of bed today. My IVIG wore off. It was a help to know I am not alone. The Linda I was in last week's video is temporarily missing. I can barely move. Putting real stories to this disease is so important. Thanks everyone! ❤
Thank you for your message and for being so open and honest Linda 💕 all of us have moments. Sharing our different stories on this first panel is so important and allows us to be here for each other.
I hope there will be more of these panels they are a great patient resource
Thanks! I have only seen part of this video but I have SPS. I have had symptoms for decades. Yes, I often have trouble walking and I have considerable stiffness and pain. I have startled reflexes, a bit of deafness and difficulty with speech. I have some bowel and bladder issues and, of course, exhaustion. I can do many daily tasks but certainly not all. I have lost a lot of dexterity with my fingers, for example, I cannot cut my toe nails and have difficulty writing , texting and typing. Due to the lack of dexterity I often have difficulty wiping my bottom!
All this aside I am living an active and full life and my SPS is a secret to most people. I am Australian and have a first rate medical and support team. The government is very good too. More news soon.
@@user-qt1in3kj4d thank you for your comment. Did you get to finish it? Part 2 came out today 😃 Thank you for your support 🥰
Thank you ✝️💕
Thank you for listening and finding it helpful.. We can’t wait for all of you to see part 2 💗
Your US Host Kimberly Clapp said she was “the first reporter in the country to report on stiff person syndrome …back in 2018” and she said her hope was “to deepen and broaden the story”. To do the same, and as a point of correction, prior reporting and advocacy on this rare disorder (which is readily available on the internet) dates back to 1997’s TV new KUTV2' s report about Chris Geilman who suffered from this rare disease. Like Céline Dion, Chris Geilman and all of you, Chris willingly traded in her privacy and anonymity to go public on national TV to inform about this devastating illness.
Even though Chris was suffering greatly and battling for treatments, she also made guest appearances on two radio talk shows in the Salt Lake area. News staff writers wrote articles on Geilman including an article entitled “Rare illness puts mother in a`bubble’” published on Dec 28, 1997. Later, a news writer wrote on May 6, 1998 that Geilman states “there was an estimated 150 people in the U.S with this syndrome, but said there is no way to be exact because there is no type of register.”. In the 1990’s we were very few and I was one of those who had SPS back then and now. In recognition of our profound isolation, need for support and information ,the Geilman’s established a web site (www.stiff-man.org/) explaining “Since we put up the Web site, many, many e-mails have come in, but we haven’t been keeping track of the numbers,”
Many years later, we are still awash in treatment uncertainties which hold questionable benefits. Because of this, we all share moments of vulnerability, lessened ability and fears. I was truly saddened to hear one of your panel members question Céline Dion’s beautiful generous 2 million dollar donation to further research into auto-immune neurological disorders like Stiff Person Syndrome at Colorado’s Anschutz Medical Campus by asking “ Why Now?” “Why not earlier?” Such thoughts never entered my mind.
Thank you for sharing your opinion as our panel members did
@@stiffpersonsyndromeHeart2heart These are facts which go beyond my opinion.
@@user-zd5ee9dq7b We are referring to your opinion on the comment of "Why now, why not earlier?" It is my opinion just as you're entitled to your opinion. You fail to mention that I do state I am grateful for the donation and hope it will bring about change.
@@user-zd5ee9dq7b Thank you for sharing all this information. It is important and now very much taken into consideration.
We learn everyday 😊
As for the advocacy, yes there are many people before us who did SPS justice and did an amazing job. We are all fervent advocates and very much implicated in all aspects of it.
@@stiffpersonsyndromeHeart2heart To clarify, my comment was separate from my ongoing support, hope and appreciation for ongoing SPS advocacy.
Your Host, Kimberly Lohan Clapp lists her professional experiences as: investigative reporter, news anchor, public speaker, published author, a national spokesperson for stiff person syndrome, a professional journalist mentor, media and PR expert. She holds herself up as having the highest degree of standards.
When she said she was “the first reporter in the country to report on stiff person syndrome” that was misleading prompting me to provide some facts showing that her comment was factually wrong. Her profession requires that ethical journalism ensures the exchange of information that’s accurate, fair and thorough and the journalist acts with integrity.
I’m guessing Kimberly Clapp was the host of your panel because she’s made appearances on behalf of people with SPS and has garnered respect and admiration though her journalism and TV appearances. Her comment saying she was “the first reporter in the country to report on stiff person syndrome” claimed credit rather than delivering reliable and trustworthy information.
For those who don’t know I’m and appreciative follower of Lea and Ilea’s Heart to Heart you tube posts and the support I’ve received each of them separately for years. I’ve devoted over 30 years of my SPS life supporting awareness, advocacy and contributing to world wide research effort because like many with SPS my suffering and pain prompted me to be more empathic and wanting help. If I hurt anyone with my commentary I’m truly sorry.
What did come out of the Celine Dion interview is that it showed SPS does exist. There is a class of doctors who are lazy and rather than look at Dr Google they dismiss SPS....now they are forced to believe it. As to what has changed is quite a bit ......instead of firing on 8 cylinders I am now firing on 4 cylinders but I am firing. I would like to write more but hands will no tallow it....more next time....apologies!
Thank you for your message. We believe SPS was put on the map the day she released her instagram video and forever grateful for this, it takes a lot of courage. We hope you watch panel 2 which addresses the documentary. (In all honesty that interview was brutal)
Always feel free to share your opinion, hope you get something out of the 2nd video.
Husband has**
Answered in your first comment 🥰
Gosh, you are all 'newbies'. I was diagnosed in '97. Hoping you're all on the SPS world map, if not then message my husband David Blows from any SPS group - you may find someone close to you.
Hi Liz :) thank you, we are all on the map 💗
We are also behind the heart to heart episodes that you enjoy and other advocacy initiatives 😊
How do I find ur husband like what platform? I would love to find someone close to chat with. We r in ohio and cannot find care. Our insurance is not covered out of state :(
@@jennycieslak2296 Hi Jenny, thank you for your message which speaker are you asking for so we put you in touch with. Thanks 💗
@@stiffpersonsyndromeHeart2heart whoever runs the TH-cam channel if they r interested in speaking to a guy on his prospective of having sps.
Thank you all for doing this! It's so important that we support each other in this fight. I will continue to spread awareness.💪🏻🫏❤️
You are a huge part of our support system, big hugs from all of us! ❤️😘