Відео

Thank you for your kind words and we hope to keep helping! Both of us are Gad65 Negative. Lea is type 1 Diabetic and Ilea had a thyroid autoimmune disease. Please note that we are just sharing our situations - we really hope you find answers soon and send big hugs 🤗🤍

@stiffpersonsyndromeHeart2heart thank you for your kind answer. Can I ask a couple more questions, please? How did you both get diagnosed? How long did it take?

@@sergunchik74 answering as Lea here it took me about 6 years that were extremely difficult as I was gaslit by the majority of doctors - and its a very tough question to answer but ultimately in May 2021 I had to leave Western Africa and come back ro Lebanon as I declined very quickly in terms of mobility and upon clinical examination , positive EMG, fact i have type 1 diabetes since age 12, initial decent response to certain meds. Unfortunately there is no universal way and its so hard but i was first diagnosed with autonomic dysfunction (in the middle of getting an sps diagnosis).

⁠ Ilea was diagnosed 10 years ago at age 30 while on faculty at Yale Medical School, where she was diagnosed but went to several more experts before accepting the diagnosis. She first saw a chiropractor at age 10 and struggled with muscle spasticity her whole life. She thinks she was spared many years being gaslit because she is a Psychiatrist.

@stiffpersonsyndromeHeart2heart 6 years is absolutely crazy, I'm sorry you had to go through that. Lots of doctors are just ignorant, when they don't understand or know anything, instead of digging into the problem, they just say it's in your head and refer you to a psychiatrist. Yesterday I visited a renown neuro-muscular neurologist who is very familiar with sps, participates in medical conferences and I thought he must be open-minded. He examined me, looked at the past medical records, my negative gad test, did emg on 5-6 muscles and....just subscribed me antidepressants. I'm so angry, disappointed, tired of being gaslit. Have another appointment next week, desperately need to get the answers

@@laurajeanholt1755 thank you for watching and hopefully help us reach more and more people! 🫶✨

@@lizblows7101 thank you for watching! We both think everyone ends up finding their own way to managing « the going out » when it happens 🫶🤗

Great topic & all so true! ❤

@@WendyGulla thank you! We thought it was as well and happy you liked the episode. Our next episode is on a topic specifically requested 😉

@@WendyGulla thank you for sharing your truth with us. We agree it can be isolating, so misinterpreted because it can be physical, mental, emotional and sometimes all at once. Sending big hugs 🤗🫶

@@AmandaIsalia yes they are! Thank you for sharing 😘🤗🤗🤗 big hugs

@@EileenKotler right? It is barely addressed or mentioned… we relate to every word you wrote! Thank you for sharing with us 🫶🤍🫶

We love you more 🤍 Thank you for sharing the above. Each one of us describe it with our own words but as SPS patients we understand what we mean - this makes it a little easier to know someone understands what pain means 🫶🫶🫶

@@lizblows7101 you are welcome! 🤗

@@monaelsayed1 thank you for sharing. Yes it is and it is one of the reason we decided to choose this topic to start and hope as many people in the community share in the comments. If only to feel a little less lonely. Big hugs 🤗

@@mariavictoriadiazcharte6611 you are welcome! 🙏🏻 - did you check our latest episode posted a few hrs ago?

@stiffpersonsyndromeHeart2heart I saw just now🙏😘💕

@@mariavictoriadiazcharte6611 we hope you enjoyed watching!

@@laurajeanholt1755 thank you for sharing how you describe, deal and manage- we think and encourage everyone to share because we can all learn from each other in order to deal as best as possible and maybe attain a better quality of life! Yes we are back and many more episodes to come on a weekly basis. Is there a topic you want us to discuss in particular? 🫶✨🫶

I agree with both and totally identified with you, what does pain mean to me? There are no words that describe what my pain is like or how it destroyed my life in all aspects and the atrocious, extreme fatigue, dysautonomia, visceral, musculoskeletal, myofascial and neuropathic pain, hell, my voice, my vision, my cognitive level , my digestive problems are so hard, this dysautonomia...not being able to sleep, when I get sleep and then wake up it's endless hell and what I can do is meditate, deep breaths, relaxing music, I love traditional Chinese and Japanese oriental music etc, the tones musicals calm and serene me in my despair, I also pray and talk with God, the universe and with myself, I detached myself from the body to be mind, soul... I live 24 hours in bed-sofa but I live through my mind and imagination ...this is how my days are, having faith that one day everything will be better, I dream of the day of feeling health, strength, vitality in my body again and being able to be independent...I dream of driving, swimming, walking, being able to have a conversation, endure the light, noises, an area with people... and that day will come, a huge kiss to all of you, thank you for this channel, I never spoke but I follow you, kisses, besitos🙏😘😘😘💕

@@mariavictoriadiazcharte6611thank you for sharing your experience with us and also for your appreciation of the channel. We are all different but we think with this word we can all identify with our shared feelings, views, words… un gran abrazo de nosotras 💕💕💕

@@Oceaneyes411 it is indeed - we hope to keep building on this community and keep helping each other!

@@Oceaneyes411 SPS is a spectrum yes! And that is not often shared or emphasized enough ! And it is so important. Thank you for your message 🫶

@@tinofayadino thank you 💕

@@ExploringSitkaAlaskausin-wj4wu thank you for sharing your experience and strength with us! Keep moving forward sure! I hope we were able to help you through some of our episodes. 🫶

@@thesmiths629 would you like us to do a short video just the both of us and share it?

@@stiffpersonsyndromeHeart2heart yes.

I have been scanning the internet for this type of channel. I recently came across your videos and was immediately wondering how y'all got connected, what your stories are etc. I barely make any effort to describe my experiences even with my closest friend and family, because it's so Strange. There's no way to fully describe the array of symptoms in a way that doesn't sound hyperbolic or bordering insanity. The severe episodes are not even something I like to discuss with family members that have witnessed them. I knew how helpless they felt, and I was in such pain I don't know how the human body can endure that level of suffering. Thankfully most of my episodes now are at night, after my children are in bed. Finding the two of you has helped me breath a sigh of relief though just to see other women around my age that look deceptively "healthy" to the average onlooker.

Coming up soon then!

@@thesmiths629 thank you for sharing all of this with us! Let’s do the videos and we will ask the community to also participate 🫶✨🫶

@@thesmiths629 thank you for trusting us to share on our platform. We really hope to keep helping and to have people share and feel like we are a community together! ♥️✨

@@thesmiths629 Again thank you for sharing your experience and what has helped you! 🫶

Thank you for your lovely message and for your support! I think the message I am conveying was lost somehow… i am not saying i am alone - but owning your pain, your disease, your journey makes you have power over them. What i am saying is that by accepting that sps, the pain, some of my symptoms are not understood or that i dont need to justify or make people around me try and understand - it frees the mind. Its for your mental wellbeing - once you accept that it is not important, since you are the one feeling it, you need to help yourself not help others understand - i hope i make sense ? On the contrary i m realistic, yes i am not alone and am thankful 🫶

Thank you for your message! Yes, one of us is and the episode links are posted in various groups. Do you have one group in specific, if so please let us know! Thanks. :) xx

@@RamiUVphoneWe hope to keep sharing content that you can relate to and can help all of us. Sharing is so important !

@@WendyGulla happy 😃 - that is a great plan! We take some things that are simple for granted and making yourself happy is important 🤩💖 What a great vision for the future and very powerful ✨ Big hugs xxx

@briancard1644 thank you again for your support 🙏🏻✨

@@Marilinaa indeed and i think it is important to share and voice it out to everyone. It is hard, big hugs 🤗

@@tinofayadino 💕💕💕

@@Marilinaa dropping tomorrow 👌✨💜

@@876jay7 we can’t wait either!

@@Karina-in9eb si muy cruel… cura es cierto pero mejor tratamentos tambien. Y como lo dices hay personas que son mas comprometida que otros… es difficil! 🤗

@@Karina-in9eb gracias para tu mensage, hablo poco espanol (Lea) Contenta de saber que tu hijo tiene mejor calidad de vida - muchos de nosotros (todos differentes) no tenemos mucha differencia… es difficil! Un grande abrazo de nosotros dos

@@jennycieslak2296 The need for awareness and research is an absolute must!

I've been self treating with immense benefits. I bought a healrhywave brand PEMF mat and use it several times a day at different frequencies. Plus I adhear to a keto- carnivore diet. Plus lymphatic massage (youtube channel-" stop chasing the pain") and also breathing exercises for facia release. I'm 6 months into my healing from a decade of confusion. I really believe the diet and mat are doing a lot. Plus I have a percussion massager to help disrupt spasms.

You are right on everything and this is why we all advocate in our own way. But we need to raise awareness, and the panel was a chance to fill a small part of what Living with SPS with no filter looks like. There is a lot to do ❤

Hi Alexandra! I interviewed you and published a story about you a few years ago. Thank you for all of your advocacy for SPS. Your athletic achievements are inspiring! Kimberly

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.

@@lizblows7101 thank you Liz for your message! Big hugs right back at you 🤗

i think C.D has no idea about SPS comunity neither wants to learn . That's why she didin't refers about her situation . She complained about her symptoms . Yeah people who knows English it will be great if they spread the message . I wish i knew English better than this . ( google translate :) But i am trying to learn <3

@@AlexandraStamatopoulou - We don’t think the documentary explained much about SPS. It did bring attention to Stiff Person Syndrome a rare disease to world wide public, but not much else…

@@GregHuggett thank you for your comment. Did you get to finish it? Part 2 came out today 😃 Thank you for your support 🥰

Thank you for listening and finding it helpful.. We can’t wait for all of you to see part 2 💗

Answered in your first comment 🥰

Thank you for sharing your opinion as our panel members did

@@stiffpersonsyndromeHeart2heart These are facts which go beyond my opinion.

@@Leslie-h1b 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.

@@Leslie-h1b 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.

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 UA-cam channel if they r interested in speaking to a guy on his prospective of having sps.

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

You are a huge part of our support system, big hugs from all of us! ❤️😘

Thank you for your message, all four of us are grateful 💕💕💕

So glad you enjoyed it! - Linda

All here to help each other. Touched by your words from Ilea 💗

A lot of emotions for all of us, grateful you shared your story with us. Big hugs xxx

❤🎉

@@stiffpersonsyndromeHeart2heart 🥰

@@Marilinaa thank you for being one of our biggest supporters

Check our earlier videos - we have already done an episode on it but if you feel we didn’t address something let us know! 😊

Thank you for sharing your story with music. This is Lea writing, I played the piano for 20 years and stopped around 8 or 9 years before diagnosis and i have been told by neurologist and other doctors to start again but i am a bit scared that i wont even know how to play… I also have spasmodic dysphonia and i have done botox twice but had to be put to sleep my muscles were spasming so much it was impossible to do other wise. It helps like you said with swallowing and also i always have a bit of raspy voice if I use it too much. But the first time i did it i had gotten to a point where i had no voice. I couldn’t do speech therapy as every time we did something my inter coastal muscles were spasming. But i got a lot of tips from her especially for swallowing small pills. I don’t sing but like I mentioned I have never lost my voice again but am cautious when it starts to get to raspy that i need to stop talking. I hope this helped a little. Lea 😊