September Ehlers-Danlos News & Updates

 
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The Funny Bone News

 

Because with EDS, every bone is a funny bone. 

 

A colorful butterfly in the background. Text: Coping with EDS

Coping with Bad Days

 

“Wow, I feel like my condition has stabilized a bit. Finally, I can take part in regular life again!” I thought a few weeks ago. Life has been challenging throughout 2020. Actually, challenging isn’t even the right word. It has been a major disaster. When the pandemic started, a lot of past trauma that I had buried deep down hit me all at once. I was barely able to function. I started therapy and became better and better until I actually felt like the best version of myself. I was beginning to live my life again, enjoying it, having fun with friends, and taking care of my physical health more and more.

Just a few days ago, I posted on Insta how I had many ‘good’ days in 2021 and how I hope to be able to continue like this. Well, as you all know, our condition can change from one moment to another, and that’s exactly what happened. I said out loud the words, “I am feeling a bit better,” and bam, a few hours later, I lie on the floor crying in debilitating back pain that led to severe GI issues for the rest of the night. Consequently, I basically slept on the floor of my bathroom, asking myself why this keeps happening.

I don’t know if you can relate to this, but I often feel the second I am a bit more stable and can actually start getting back to some sort of routine, fate is like, “Uhm, nope, Karina. Happiness is really not for you. Please go back to suffering.” Every little activity I participate in has consequences. But I never know what kind of consequences. Sometimes, I do a bit more, and I am in slightly more pain the next day. That’s fine. I can deal with that. However, another day, I do the exact same thing and am down on my couch for a week after. Why? I didn’t do much yesterday. Was it because I ate something wrong? Was it because this one exercise I did was hurting me? Was it because I did too much over the last week and pushed my body beyond its limit? Or was it just a stupid coincidence, and I have a ‘normal’ illness, like a stomach flu?

I have no clue. And that’s the most frustrating part of it all: Not knowing why I feel this bad. I have all these plans, ideas, projects, but every single time I really begin to live again, I get stopped in my tracks and need to put life on hold again. I don’t know about you, but I have a really hard time coping with those days. However, I always somehow get through it, and today, I wanted to share my coping strategies with you.

 

  1. Journaling. Writing in my journal is my most important coping mechanism. It helps to relieve tension without involving other people. Experts also suggest journaling as a coping strategy.
  2. Activity. I love to be in nature, so whenever I feel anxious (and my body allows), I go on hikes or walks, or spend time on my paddleboard or kayak. Exercise is known to reduce stress and anxiety.
  3. Meditation and Tai Chi. Meditation helps me with anxiety, stress and pain; Tai Chi is a nice distraction from my thoughts. Studies suggest that meditation reduces anxiety, and Tai Chi can lower stress and anxiety levels and improves the mood.
  4. Volunteering. Volunteering in a nursing home was such an enriching experience for me. Studies suggest reducing the unhappiness of others contributes to making us happier.
  5. Peer support. Keeping busy while helping others is one of the best ways for me to cope with EDS and all challenges. Sharing my knowledge and supporting people at the beginning of their journey with EDS also helps me to see how far I have come. Peer support was found to be helpful for many conditions, including mental health conditions.
  6. Constant learning. Knowledge is power. Knowing as much as I can about EDS helps me to keep a sense of control over my condition, and learning why my body behaves in a certain way makes it easier to cope with symptoms; they feel less threatening with increased knowledge.
  7. Therapy and Breathing. One of the best steps for me was having a therapist supporting me with all my everyday struggles. Literature suggests CBT might be helpful to cope with chronic illness as well.
  8. Having a voice. In the past, I often didn’t feel heard. Especially with doctors, I felt like I didn’t have a voice. Today, I share my experiences with chronic illness in my blog and on my social media profiles, which gives me a sense of purpose and makes me feel visible!
  9. Loud Heavy Metal. Listening to loud music, maybe singing along, makes happy! 

I would love to hear how you cope, especially with those crappy days.

Much Love,

Karina

Connect with Karina on FacebookInsta or Twitter

 

News

 
Yellow background and the word hope with an arrow

The Good Hope Clinic

Advocate Jon Rodis shared these great news with us: Development and implementation of the first interdisciplinary program for multi-system issues in connective tissue disorders at the Toronto General Hospital
A iPhone on a table with EarPods

Patient Draws on Her Own Experience to Help Others Through Podcast

Ehlers-Danlos News
 

“Kerry Gabrielson, a 34-year-old with Ehlers-Danlos syndrome (EDS), is devoting herself to raising awareness about hypermobile diseases and helping people with these disorders learn how to manage their symptoms through her podcast Hypermobility Happy Hour.”

A medal with the number 1

13 US Paralympians to watch at the Tokyo

Paralympics

NBC
 
Allysa Seely lives with Chiari Malformation, EDS and is a Para-triathlete and six-time world medalist.
A woman with long blonde hair bound together and a athletic shirt stating 'Seely USA'

Meet the Paralympian

Allysa Seely

NBC

 

“Seely was diagnosed with Chiari II Malformation, basilar invagination, and Ehlers-Danlos Syndrome, which effects her brain, spine and connective tissues in 2010.”

Two people standing outdoors with many people in the background. To the right is a woman in a pink jacket holding a gaming console and on the left is a man with curly brown hair holding a pink box saying ByoWave

Galway natives win 20,000 Euro Social Entrepreneurs Ireland Award

Galway Daily

 

“Brandon Blacoe from Salthill and Eibhlin O’Riordan from Knocknacarra co-founded Byowave to make accessible and customisable video game controllers for people with disabilities.”

 

“Co-founder Eibhlin O’Riordan has Ehlers Danlos Syndrome, which means she can only play games with one hand.”

 
EDS Blogs & more
 
Lava flowing into the ocean.

Addressing Pain in Hypermobility Disorders

Dr. Linda Bluestein

 

“Is your body on fire? Do you feel like you simply cannot make it another day? This is what I hear from my bendy patients – sometimes as young as 10 years old. It is tragic, but there is HOPE!”

Karina, a woman with super short brown hair. She is wearing a necklace showing two dolphins and large silver earrings.

Beyond my Battle

with EDS

Karina Sturm

 
“Imagine you are chronically ill and have to deal with regular symptoms, appointments, managing prescriptions on a daily basis… but on top of it, you also need to take care of your apartment, cook, clean, wash, deal with relationships, etc. I’m chronically ill on top of what other people consider everyday life. ”- Beyond My Battle Blog 
A microphone with a sign in the background saying On Air

Ehlers-Danlos Syndrome

Rare Disease Connection Podcast

 

“Hear from the experts in our conversations on a rare genetic disease: Ehlers-Danlos syndrome. We cover EDS diagnosis, new treatment options, and how to connect with the EDS community.”

 
Advocates Like Us
 
Introducing, Selma Blair | In Theaters Oct 15 | Streaming Oct 21 on discovery+
Video

Introducing Selma Blair

Documentary

 
“Director Rachel Fleit’s deeply intimate and powerful feature of one woman’s journey of personal acceptance and resilience, Introducing, Selma Blair, follows the singular actress as she reckons with the next chapter of her life after being diagnosed with Multiple Sclerosis. The film explores complex issues ranging from dissecting deep-rooted myths about beauty, and the collective fear around disability and mortality. Complete with her trademark wit and humor, the film follows Blair as she reconciles a journey of monumental transition.”
 

Find out more

A black and white photo of Ian Harding, a man with short brown hair and a black shirt. He is smiling.

Ian Harding Part 1

ABILITY Magazine

 

“Ian Harding is a passionate advocate for people with lupus, an empathic son to a mother with the chronic condition, and an ally to people with disabilities around the globe. In the first part of this interview, ABILITY’s Karina Sturm speaks with Ian about his childhood in Germany, his acting career and his work for the Lupus Foundation of America.”

Two women at a table in a cafe. One is typing on a keyboard, the other one is looking at her.

Meet Haben Girma

ABILITY Magazine

 
Haben Girma is a disability rights advocate, book author,  and first deaf-blind Harvard Law School graduate.
 

Spotlight: Chronic Illness & Disability

 
A person in a wheelchair with a film reel in their hand. Text: Lost Reel Short Film Showcase, Cinema Touching Disability

Free Short Film Streaming

Cinema Touching Disability offers free online streaming of their award-winning short films on topics such as autism, Deaf culture, Down syndrome and many more. Until September 15, the films can be streamed online and for free. 
A artsy photo of a woman standing on a wall. Light shines in her face which makes it look like we can see through her skin.

BBC warned over ‘wildly irresponsible’ documentary on social media ‘fakery’ allegations

Disability News Service

 

Disabled campaigners have warned that a BBC documentary about social media “influencers” allegedly faking their chronic illnesses, and BBC News coverage promoting the programme, were “wildly irresponsible” and risk inflaming the hostile environment they already face.

A woman with closed eyes and a red face. Text: Sickness & Lies

BBC toxicity just peaked with the ‘Sickness and Lies’ documentary

The Canary

 

“I have lived experience and a vested interest in Sickness and Lies. My partner is chronically ill. She lives with 15 different illnesses and conditions. These include the genetic connective tissue disorder Ehlers-Danlos syndrome (EDS), myalgic encephalomyelitis (ME), and different types of seizures.”

A large podcast microphone. Text: Off Scrip Media

OffScrip Media

A network of amazing podcasts on topics such as cancer, rare disease (NordPod), healthcare, MS, Endometriosis and more.
 

Research & Resources

 

Prevalence of functional GI Disease and pelvic floor symptoms in Marfan syndrome and EDS. The prevalence of FGIDs and pelvic floor symptoms in EDS is higher than that found in MFS. The prevalence of FGIDs were similar across EDS subtypes. This study supports the mounting evidence for FGIDs in those with connective tissue diseases but more specifically EDS. A gut with some angry looking bacteria in the background.

Prevalence of functional GI Disease and pelvic floor symptoms in Marfan syndrome and EDS

“This was the largest GI study ever done on Ehlers-Danlos (including Marfan and related disorders) and I am very thankful that Dr Wolf and her team took on this research for the benefit of us all.” Jon Rodis, who helped to initiate this study with Dr Wolf, Dr Nee and their team at BIDMC and Harvard Medical School, says. 

 

Read the full study

Are patients with hEDS or HSD so different? hEDS and HDS patients showed similar disease severity score except for pain, motricity problems and bleeding, and similar spectrum of extra-articular manifestations. […] These results add weight to a clinical pragmatic proposition to consider hEDS/HSD as a single entity that requires the same treatments.

Are patients with hEDS or HSD so different?

Short answer: Not really. The authors suggest to consider EDS and HSD one single entity.
 

Read the full paper

NM: New Mobility logo

6 Strategies to Navigate your Insurance Provider’s Approval Process

New Mobility
 
Jon Rodis shared this great resource with us on how to deal with insurance providers. We hope it is helpful to you as well. 
 

Read

 

Survey

 
A zebra holding a book with questions marks above its head. Text: Survey: The relationship between psychological trauma and functional gastrointestinal disorders within a joint hypermobility syndrome / Ehlers-Danlos Syndrome Patient Population

Survey regarding GI issues in EDS

Jon Rodis shared this survey with us. The lead investigator says:

Have you been diagnosed with a connective tissue disorder? Help us (Principal Investigator: Dr. Kyle Staller-Center for Neurointestinal Health at Mass General Hospital in Boston) learn more about the long-term impact of trauma on gastrointestinal problems in connective tissue disorder patients by agreeing to participate in a research survey study. The research survey will be one time only.

This research survey will only take you 15-30 minutes and could make a difference for the understanding of the impact of trauma on the development of functional gastrointestinal disorders.

More information

 

Events

 
EDS Echo Summit Series. Neurological Complications. Virtual Conference September 25-26

EDS Echo Summit: Neurological Complications

The Ehlers-Danlos Society hosts a virtual event with a community day on September 26 and a professional day on September 25.

Find out more and sign up: 

 

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!

 
 

 

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