October Ehlers-Danlos News & Updates

Published: Wed, 09/29/21

The Funny Bone News

Because with EDS, every bone is a funny bone.

A woman from behind standing at the ocean. The sun is shining. She has long black hair.

Stronger Together

‘Positive Vibes to Keep Us Alive’

Hi. How’s it going?

My name is Sublime Roo;

I’m a UK, Indie Music Producer and I’m an EDS sufferer too...

A typical story mine, wasn’t diagnosed ‘til twenty-five;

Since then, how life has changed - now I make music which keeps me alive.

Found out that I had Crohn’s, crumpled spine and weak bones too;

All I could envisage, was,

‘How would I see all this through?’

Such complex diagnoses, I felt like giving in;

You can either lay down and take it, or find a way to win.

A mission has it been! And always will it be!

But music & mother nature, are the things that set me free.

I once made up a rhyme, to help friends understand;

Exhausted explanations; conversations out of hand:

‘I stipulate, that if I don’t manipulate, then I’ll dislocate!’

This helped give them an insight, and we had a good giggle too.

But on a serious note; it’s no easier being Sublime Roo.

You see sometimes it hurts, to have to justify;

To strangers, loved ones, doctors! The explanation as to why:

The reason’s in the mirror - we look so reasonable!

‘It cannot possibly be, that this girl could be so ill?’

That is just the hitch though - we laugh and dance and sing;

We look like every other - peoples perceptions bewildering...

The zebra with their stripes, the horses with proud mane;

These strong majestic creatures - don’t we all look just the same?

These minute variations and the changes in our days;

Not all can see the picture, of our most perplexing ways.

So out I go - the ocean, set free my head and heart;

And as I stand there healing, I know at least, ‘I’m taking part!’

Our journeys may be different, but we’re really all the same;

Keep up those positive vibes, you’re the winner in this game!”

I hope this poetic story helps to inspire you and others to live a life you love, despite all the odds against us.Despite the chronic pain and migraines, the sleepless nights and exhaustion, the dislocations and feeding tubes, bodily-braces and operations, loss of sight, mobility, wheelchairs, endless hospital appointments, etc, etc, etc!!

Always remember:

You are strong.

You are tenacious and resilient.

You are smart and fantastic at adapting.

You are patient and understanding.

You are many of these things BECAUSE of EDS!

You are a true warrior and life has many positives waiting for you.

So keep on, keeping on - especially on those extra challenging days as you never know what magical moments are waiting round the corner...

If you would like to listen/watch/follow my music and messages; I would love to see you there. Please feel free to check it out on the links below and I hope it brings some peace and healing to you too.

With peace, love, justice & unity for all.

Stay wavy & stay strong zebra family.

www.sublimeroo.co.uk

YouTube, Soundcloud, Spotify

Insta, Twitter, Facebook: @sublimeroo

SaVe The Date!

Dr. Chopra, a man with short black hair and glasses. He wears a white shirt and a tie

Webinar "Understanding EDS and managing it"

Presenter: Pradeep Chopra

Date: Thursday, October 7

Time: 7.30 - 9.30 PM EST

In this two-part series Dr. Chopra will discuss EDS and its management, as well as the management of Long COVID.

News

Jameela Jamil, a woman with long black hair and a white dress with black butterflies has her arms folded in front of her body and is smiling slightly.

Jameela Jamil on Managing the Invisible Illness Ehlers-Danlos Syndrome

Parade

"Often we're met not with sympathy, but doubt and mockery. That's why it's so important for me to stay loud and proud about it so we can have more representation around Ehlers-Danlos and get some funding."

Read

A quote on yellow background: To speed progress in treating chronic conditions, engaging patients and caregivers as research partners

Jeffrey Lubell

BMJ Opinion

"Chronic diseases like Ehlers-Danlos Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Fibromyalgia have long been understudied relative to their prevalence and the extent of their disruption of normal life."

Read

A woman and a man outdoors. The woman wears sunglasses and has long brown hair and the man wears black glasses and has a full beard

Disability doesn't mean that I have to be grateful for a relationship

METRO.co.uk

"Previously, a boy who I was dating left me at a train station seven hours away from home. Why? He was annoyed by my pain. My use of crutches slowed him and his holiday down."

Read

Low Dose Naltrexone Being Studied as Treatment for CRPS

Pain News Network

"Basically, this drug seems very well suited to treat several mechanisms of the disease process. All those properties would seemingly be quite helpful in CRPS patients."

Read

EDS Blogs & more

End Fake Claiming

Campaign

"Fake Claiming is the act of harassing a disabled person by claiming they are faking their disability. This abuse is commonly directed towards people with Invisible Disabilities, those who do not use visible mobility aids (or use them part-time) and people who don't meet the narrow stereotype of what disability looks like (e.g. younger people). Fake Claiming can happen anywhere at any time but commonly occurs when Disabled people access facilities such as accessible parking spaces, toilets or public transport seats. Almost every person with an invisible condition will have been subjected to Fake Claiming at some point. This needs to end.

After being subjected to Fake Claiming numerous times since becoming disabled due to my Ehlers-Danlos Syndrome, I have set up this campaign to help raise awareness of Fake Claim Harrasment and protect others from this type of discrimination."

Get involved

Karina, a woman with super short brown hair. She is wearing a black hat

Sturm and Drang: One Disabled Journalist's Story

NORDpod

"From giving up her job as a research associate in 2010 to cashing out her life savings to come to the US for better care, Karina has managed to adapt her life around her symptoms and is the accidental advocate you need to know.

Listen

A black woman with short hair sits in a wheelchair and looks at her phone

How Young Disability Activists Are Using TikTok To Make A Difference

Refinery29

"In November 2020, 24-year-old Britt shared a TikTok of herself talking - in a silly, light-hearted way, she says - about Ehlers-Danlos syndrome (EDS). She expected a few of her friends to see it, at most, but that's not exactly what happened."

Read

Making the 'Invisible,' Visible

Wait, How Do You Spell That? A Rare Disease Podcast

"In this episode, we speak with journalist and filmmaker Karina Sturm about Ehlers-Danlos Syndrome and disability awareness and inclusion."

Listen

Advocates Like Us

Selma Blair, a woman with short blonde hair sits on a chair with her walking cane in one hand. She is dressed in purple and red

A Candid, Vulnerable Selma Blair Explains Why She Invited Cameras To Document Her MS Journey

Variety

"I'd compare myself to people. I didn't understand people didn't hurt every day. I've hurt since I can remember."

Read

Ian Harding, a man with short brown hair and a black jacket. He is looking serious and lifting his fist with the letters: LOVE.

Ian Harding Part 2

ABILITY Magazine

"Ian shares details about a future film project, his most kept secrets, the item he would bring to a deserted island, disability language and ableism."

Read

A family sitting on a bench. One son on the left is having curly red hair and a cute labradoodle on his lap. Next to him is his mom, a woman with brown hair who smiles brightly. Next to her,
the younger son who wears a white shirt. And on the right side is the dad wearing a white shirt as well.

A Father's Search to Find a Cure for a Rare Disease

ABILITY Magazine

"Keith McArthur is a father, journalist, kidney disease survivor, and rare disease advocate, who put his life on hold to find a cure for his son Bryson's rare condition.

Read

Spotlight: Chronic Illness & Disability

A film poster showing a young boy in the sun.

the reason i jump

Documentary

"Based on the bestselling book by Naomi Higashida, the reason i jump is an immersive cinematic exploration of neurodiversity through the experience of nonspeaking autistic people from around the world."

It will be screened at the Cinema Touching Disability Festival. Find out more about the screening.

The Guardian wrote a review about it here.

More about the film

A protest with a sign with Britney Spears with her mouth taped
closed

Britney Spears' case has shown why guardianship laws need to change

The Guardian

#FreeBritney movement.

Read

Demystifying Disability with Emily and Ellen Ladau

Podcast with Judy Heumann

"Judy is chatting with Emily and Ellen Ladau, who are a mother-daughter duo that have the same physical disability."

Listen

A black athlete with a red suit and a blue ribbon in her black hair.

How the Tokyo Olympics Changed the Conversation About Athletes' Mental Health

Time

"To be able to overcome your own ego and step aside, that's huge."

Read

Research & Resources

CCI and Structural 7-Tesla Imaging Project in patients with complex chronic illness

"This Project is a carefully conceptualized series of coordinated MRI brain scans using ultrahigh resolution 7-Tesla imaging. With our planned sequences we can, in a reliable and replicable fashion, detect a range of potential symptom mechanisms such as structural abnormalities (e.g., CCI), autonomic dysfunction, cerebrospinal fluid flow problems, brain blood flow issues, intracranial pressure evidence, and metabolic impairment."

Find out more

Two surgeons with a scalpel. Text: Periooperative Care in Patients with Ehlers-Danlos Syndromes

Surgery and EDS

Jon Rodis sent this to us. This publication by Dr. Linda Bluestein and Dr. Pradeep Chopra summarizes complications and how to avoid them and what to look out for when doing surgery on a person with EDS, including comorbid conditions such as dysautonomia, MCAS and Chiari malformation. The publication is free to read.

Read full paper

Thanks for reading The

funny bone news!

We hope you enjoyed it.

John, a man with short brown hair is smiling. He wears a tie and a suit

Karina, a woman with shaved hair is wearing a black hat and large silver earrings.

A collaboration with John @ EDS Awareness & Karina Sturm

Let us know what you want to read here!

You can find Karina on Twitter, Facebook and Instagram.