It's one thing to wonder how your physical and mental health might deteriorate as you age.
It's quite another thing to know.

For two years I've been unbreakable, but today it broke me. #StiffPersonSyndrome has turned me into a human without hope in just under two years.
I don't want this life.
I'm stuck in it and I'll make the most of each moment, but I'll wake up every morning for the rest of my life disappointed that I did.

It's one thing to wonder how your physical and mental health might deteriorate as you age.
It's quite another thing to know.

For two years I've been unbreakable, but today it broke me. #StiffPersonSyndrome has turned me into a human without hope in just under two years.
I don't want this life.
I'm stuck in it and I'll make the most of each moment, but I'll wake up every morning for the rest of my life disappointed that I did.

Father diagnosed with same one-in-a-million condition as Celine Dion unable to hug family | The Independent
#StiffPersonSyndrome

The rare, progressive neurological disorder causes stiff muscles in the torso, arms and legs

https://www.independent.co.uk/news/health/celine-dion-illness-condition-sps-b2247108.html

This is #21 of what I call "Good Juice Day", and the last for 2022.

It's IVIG for this of you who don't know (intra-venous immunoglobulin).

I made cookies 🍪 and rocky road 🍫 for my wonderful #nurses 👩‍⚕️👩‍⚕️.
If I could do the same for all the people who donate whole blood or #plasma , I would.
THANK YOU if you are one of those superheroes 🦸‍♀️🦸‍♂️
And if you're not but you've considered it, please know that I have a pretty darn awesome life - despite the odds - because of this treatment, and I'm just one person.
Imagine the difference you can make to thousands!
Much love 🤗❤😀

#blooddonor #donation #StiffPersonSyndrome #RareDisease #IVIG #grateful #gratitude #ThankYou

Having a #RareDisease that everyone iss suddenly talking about has been... an experience.

At first I thought it would be good - and I'm sure it is - for exposure and #awareness
But it's really awful to see theories and jokes I'd previously been protected from because nobody had ever heard of this #disability.

This is what I've read:

1. #CelineDion is being punished by God because she supports #TransKids
2. It's a vaccine injury. Of course 🙄
3. "This is the difference between people who accept getting old and people who whinge about it and give it a name". This one hurts.
4. "Hopefully it attacks her throat muscles sooner rather than later and she stops singing"

There's also been a lot of "news" sites insinuate that she's going to die because she has #StiffPersonSyndrome

To be honest, for today, I liked it better when nobody was talking about it. I feel #sad and #deflated.

I hope Celine and other people recently diagnosed are protected from reading this shit.

#disability #DisabilityAwareness #SPS #support #sunday #ChronicIllness

French-Canadian singer #CelineDion said she was diagnosed with called #StiffPersonSyndrome, a rare neurological condition.

#Watch to know more ⬇️

#Watch | French-Canadian singer #CelineDion, in an emotional video on Instagram, announced the rescheduling of her Spring 2023 shows to 2024. The singer said she was diagnosed with called #StiffPersonSyndrome, a rare neurological condition.

Edited by: @kirti305@twitter.com

What you need to know about the Stiff Person Syndrome

https://www.dw.com/en/what-you-need-to-know-about-the-stiff-person-syndrome/a-64044186?maca=en-dipa_news_mstdn-34613-xml-mrss

#CelineDion #neurologicaldisease #autoimmune #StiffPersonSyndrome #SPS #musclespasms

天后級歌手Celine Dion
親自宣佈罹患不治症「僵硬人症候群」
無法如常唱歌 押後明年歐洲巡唱

請支持娛壹Patreon | #CelineDion #僵硬人症候群 #stiffpersonsyndrome #娛壹 | #MEWE香港娛樂

【如要支持，請關注、轉推、給星同留言】

https://www.facebook.com/as1hk.entertainment/photos/a.105078798522853/239438761753522/

#News Teary Celine Dion cancels 2023 tour as she reveals rare medical diagnosis (We love you Celine!) #CelineDionTourCancelled #StiffPersonSyndrome #CelineDion
https://c.im/@ABC/109482328920973958

I never thought I'd have something in common with #CelineDion but here we are.

My best wishes to her as she deals with what this means for her life. It's tough.

Perhaps a silver lining is that nobody ever knows or talks about our #disability , and now everybody will be.

Please #askme if you have any #questions
I'm #excited that there are discussions about it. Being 1 in a million can be pretty #lonely.

#StiffPersonSyndrome #disabilityawareness #gratitude #news

Celine Dion diagnosed with rare Stiff Person Syndrome as she cancels 2023 tour dates - ABC News https://www.abc.net.au/news/2022-12-08/celine-dion-cancels-2023-tour-reveals-rare-medical-condition/101752746

Celine Dion reveals stiff-person syndrome diagnosis

#CelineDion #Singer #StiffPersonSyndrome
nn_ath_celine_dion_stiff_person_syndrome_221208

@aljazeera
#StiffPersonSyndrome

Stiff Person Syndrome Support Group and Charity. | United Kingdom

Raising Awareness

https://lizblows.wixsite.com/spsuk

https://www.nbcnews.com/pop-culture/pop-culture-news/celine-dion-reveals-stiff-person-syndrome-emotional-video-postpones-to-rcna60723

#CelineDion #StiffPersonSyndrome

Celine Dion, 54, is diagnosed with incurable neurological disease: Tearful singer reveals she has rare one-in-a-million 'Stiff Person Syndrome' that turns sufferers into 'human statues'
#CelineDion #StiffPersonSyndrome #DisabilitiesHappenToAnyoneAnyTime

https://www.dailymail.co.uk/tvshowbiz/article-11516313/Celine-Dion-diagnosed-incurable-neurological-disease-Stiff-Person-Syndrome.html?ito=social-twitter_mailonline

After almost two years, my renovation is complete and in 3 weeks it's time to go #home

I'm so, so #anxious. The day I moved here - March 25th 2021 - I was officially diagnosed with #StiffPersonSyndrome. I almost lost my life 2 months later.

Now I'm a different person to the go-getter who packed up and moved all on her own.
Now I'm so anxious about #packing that I just wandered around for an hour looking at things. Picking them up and putting them back down. Opening cupboards and staring. Moving empty boxes from one room to another.

How do I do this?
What can make this not only easier, but possible?

#help #moving #packing #support #disabilityawareness #disability #anxiety #lost

Last week some people on a #facebook support group for my #disability came at me for saying I refuse to be miserable, that I choose not to give up because there's a long road ahead.

They said things like, "One day you'll know how bad it feels",

"you'll wake up every day and wish you weren't alive",

"this disease with tear you down and wear you into the ground"

"I used to be like you but you'll find out soon enough".

That I was disgusting and disrespectful for being #positive and #optimistic.

Honestly. #WTF 😮

It did break me for a day or two, but I left the group immediately and don't regret it. Better to be alone if that's what #support looks like.

I'm not going to choose to be a #victim.

I am done with people #gatekeeping disability.
It's embarrassing, unhelpful, and cringy.

✋🛑STOP IT 🛑✋

#DisabilityAwareness #StiffPersonSyndrome

I created this #gofundme for my birthday but I wanted to keep it going. It's to raise money for a #charity known as The Stiff Person Syndrome Research Foundation. My story is in the Gofundme but #stiffpersonsyndrome it's a rare, highly underfunded and under researched terminal neurological disease. Even if it's just a #boost or $1, anything counts to helping those like me with this disease for a brighter future!
https://gofund.me/960cbe4a

#disabilityawareness post! 🦓

I am #oneinamillion and if you're interested in #weird, #rare shit, #neurology and #neuroscience , here comes some brain food 🧠

I already did an #introduction post, but here's one introducing my #disability.
I'm the only person (it seems) to have ever mentioned it on Mastodon.

I challenge you to find a worse disease with a more ridiculous name than #stiffpersonsyndrome 😂

Because nobody has heard of this disease, I ask people to imagine #MS, #parkinand #MNDhad a baby. That's what it is like.

It is a #neuromuscular, #autoimmune #disease usually caused by #GAD antibodies which attack the #Gaba protein in the central nervous system.
The antibodies are usually associated with #T1 and #LADA diabetes.

#Symptoms include extreme muscle stiffness, rigidity and painful spasms, tremors, shakes, weakness, and cramps which can generate enough force to fracture bones. Mine are not this bad and I hope they never will be.

Those of us with #SPS have heightened sensitivity to noise, sudden movements, and emotional distress, which can set off #muscle spasms and pain.

I'm only 40 and it's been almost 2 years since I was diagnosed.
I try to stay pretty #positive because I don't see any other choice. I still try to stay #active and so the things I #love, even though the consequence is always pain.

#Movement is key to life.

Use it my #friends. Use it because you never know when you may lose it ❤

#disabilityawareness post! 🦓
I already did an #introduction post, but here's one introducing my #disability.
I'm the only person (it seems) to have ever mentioned it on Mastodon.
I am #oneinamillion and I'd you're interested in #weird, #rare shit, here comes some brain food 🧠

I challenge you to find a worse disease with a more ridiculous name than #stiffpersonsyndrome 😂

It is a #neuromuscular, #autoimmune #disease usually caused by #GAD antibodies which attack the #Gaba protein in the central nervous system.
The antibodies are associated with #T1 and #LADA diabetes.

#Symptoms include extreme muscle stiffness, rigidity and painful spasms, whoch can generate enough force to fracture bone.

Those of us with #SPS have heightened sensitivity to noise, sudden movements, and emotional distress, which can set off muscle spasms and pain.

I won't lie, most people in this community are older, miserable, and negative. I'm only 40 and it's been almost 2 years since I was diagnosed.
I try to stay pretty positive because I don't see any choice.

#Movement is key to life.
Use it my friends. Use it because you never know when you may lose it ❤