April Ehlers-Danlos News & Updates

Published: Tue, 03/29/22

The Funny Bone News

Because with EDS, every bone is a funny bone.

News

A woman with long brown hair and brown eyes stands outdoors. She is wearing a black blazer, a black necklace, and golden hoop earrings and
smiles brightly.

The Plight of the Invisibly Ill

Elle

"Chronic diseases perplex doctors, while leaving patients mysteriously sick. Meghan O'Rourke explores the struggles in an excerpt from her book, The Invisible Kingdom."

You can read the Elle article HERE.

Meghan O'Rourke lives with Ehlers-Danlos syndrome and spoke with newsletter editor Karina Sturm about her book and her life with EDS in an exclusive interview (see below).

A book cover. A golden artwork symbolizing a human body on blue background with text: The Invisible Kingdom, Reimagining Chronic Illness, Meghan O'Rourke

Chronic Pain Partners' Interview with Meghan O'Rourke

As part of this newsletter, journalist Karina Sturm had the pleasure of speaking with Meghan O'Rourke, a fellow zebra, but more importantly, Journalist and author who recently published the bestselling book "The Invisible Kingdom," highlighting the challenges of living with several chronic conditions, including Ehlers-Danlos syndrome. Meghan O'Rourke is an award-winning writer, poet, and editor, and her work has been published in The New Yorker, The Atlantic, and Slate, among others.

You can read the interview

HERE.

Two women: Left: Miss Wheelchair Virginia, a woman with chin-long, curvy
blonde hair sitting in a wheelchair, wearing a black dress and a crown. Right: Miss America, a woman with long brown hair and brown eyes. She wears a blue shirt and a silver crown.

A Rare Disorder Links Miss America And Miss Wheelchair Virginia

Forbes

"Now, they are banding together to help the disability community."

Read

A woman with brown hair and glasses is standing behind a chair with her head resting on
her fist. She smiles.

Doctor Who Devised a Treatment for Her Rare, Painful Disease Started Clinic to Help Others

People

"'I'm able to use what I've gone through to help other people,' says Dr. Alissa Zingman of her battle with Ehlers-Danlos Syndrome."

Read

Two people - a man and a young woman - in a research laboratory. They
both wear a white lab coat and face masks, and the woman is holding up a pipet.

MUSC student and Charleston teen at forefront of rare disease breakthrough

The Post and Courier

"When Cortney Gensemer visited her professor during office hours to discuss her Ph.D. dissertation, she had no idea she would be able to study her own disease."

Read

Six photos next to one another. A strand of DNA, hands
holding other hands with a stethoscope on the table, a surgery with two pairs of hands and surgical knives, a governmental building and a hand writing something into a table on a wall.

MUSC faculty to discuss collaboration to bring hEDS research from lab to bedside

MUSC Catalyst News

"'Brought together by one young researcher with hEDS, Norris and Patel have formed a close collaboration that pushes the science forward for the benefit of these patients."

Read

Resources

Chronic Pain Partners' Interview with Dr. Linda Bluestein

As part of this newsletter, journalist Karina Sturm spoke with Dr. Linda Bluestein, fellow zebra and doctor, who recently released a new resource for people with Ehlers-Danlos syndrome: the educational program "Maximizing Your Medical Appointments." Together with Keeya Steel aka "Hell's Bells and Mast Cells," Dr. Bluestein, Medical Consultant for Chronic Pain Partners, put together a course, featuring seven videos to help patients to prepare for appointments and connect with their doctors. For our readers, we wanted to find out more about this new resource and spoke to Dr. Bluestein.

You can read the interview

HERE.

Stronger Together - Insights from the Community

Eve, a woman with brown hair parted into two braids. She is wearing short pants and a shirt but also sunglasses and gloves and holds up sticks. The ground is
covered in snow.

Hello! My name is Eve, I’m almost 57, and I reside in one of the most awesome outdoor cities in the country, Duluth, MN. Prior to my hEDS diagnosis, I thought it was “normal” to have a physical therapy file that was two feet thick!

My diagnosis came after a phone call from my sister saying, “Eve, I know what you have! Gwen [my niece] was just diagnosed with Ehlers-Danlos!” From there, I finally had a “label” for my issues.

Fortunately for me, I had parents who kept me very active throughout my childhood, and I brought that habit into my adult life. I credit my continuous activity level and physical therapy for my ability to avoid surgeries, drugs, and major bracing apparatuses.

Where I reside, docs really haven’t learned what EDS is, nor how to deal with it properly. My appearance is that of a very fit, healthy person with a positive, upbeat attitude, so most people think I’m healthy. On paper, wow, am I a mess!

My “ailments” beyond hEDS include autoimmune conditions, for example, Hashimoto’s, chilblains, cold urticaria, Raynaud’s, asthma, anxiety, a vision issue from a traumatic brain injury, and the list goes on! My numbers are all high, too: Prediabetes, high cholesterol, high heart rate, but my blood pressure and weight are great.

Growing “old” with hEDS has been a challenge. Severe stenosis in combination with the hEDS has created a situation where I have had to give up various activities because of my neck compression. First, I had to give up running after 30 years, which caused a ripple effect. Those muscles I had from running began to disappear, so other joints became loose. I also had to stop skate skiing (I was a competitive racer for 25 years), playing tennis, mountain biking, competitive dragon boat racing, and playing the violin.

Activities I am able to do for just an hour at a time now are kayaking, but only with a carbon fiber dragon boat paddle, biking, with my super-duper adapted to me bike, hiking, but only on uneven technical hilly stuff or things dislocate from the same motion over and over, classic skiing, but with shorter poles, so my top rib doesn’t pop up, and snowshoeing, only with super small snowshoes, so my legs don’t rotate!

Being blessed with energy and endurance that allows me to rarely become winded or worn out, I am able to go pretty darn fast at some of those things for an hour; then I’m on my back, so my neck doesn’t compress. Friends are used to seeing me lay down in the middle of a trail, sidewalk, or floor.

My passion for keeping people moving has led me to take my 30 years of coaching and turn it into a free group for those who have physical issues or just don’t want to exercise. Most of the individuals in my group are 40- to 80-year-old women.

The things that have helped me the most as I get “looser” are Qigong, transformational breathing, acupuncture, going to my PT weekly for muscle energy, (which literally puts me back together), exercise, and daily PT at home. I do Qigong every single day; it is something that heals and calms and can be done even laying down and using imagery. My acupuncture routine is done three times per week and is a lifesaver!

My advice is to move what you can, smile, even if you are sad, be thankful for what you can do, which at some moments might just be breathing.

- Eve G.

(You can join Eve's EDS Athletes Facebook group here)

[Disclaimer: We know the symptoms of EDS vary for every person. We are all different, and our newsletter does not offer medical advice but personal stories from single individuals. - The Newsletter Team]

Eve has also been part of our

EDS & Aging Project

where we asked 19 aging people to share their experience about AGING with EDS.

You can view the full PROJECT

HERE.

EDS Blogs & more

Patient Guide Book

The Zebra Network

"The Zebra Network works to increase awareness, education, advocacy and support for patients with Ehlers-Danlos Syndrome."

Read

The molecular changes in EDS/HSD

by PhD student and researcher Sabeeha Malek (hEDS Together)

"Studies looking at the fibroblasts of EDS/HSD patients found that they also show abnormalities."

Read

Three large letters HHH on yellow background.

Miss America Discusses Life as a Pharmacy Student with EDS

Hypermobility Happy Hour

On this episode, Kerry interviews Miss America (Camille Schier) who was named Miss America 2020 after showcasing her science skills.

Listen

Events

A walking zebra with a green shirt and red pants.

Run Like a Zebra!

Chronic Pain Partners is a Gold sponsor of this wonderful event.

Run Like a Zebra is an event to raise awareness for EDS. It will be held on Saturday, May 21 at 9 AM CST. You can participate virtually or in Florence, WI, in a 1K or 5K walk, run or roll.

Find out more

HERE

Spotlight: Chronic Illness & Disability

A beautiful blonde woman sitting in a garden and wearing a white blouse
that shows her shoulders and dungarees.

Victoria's Secret features its first model with Down syndrome

NPR

"Sofía Jirau is making history as Victoria's Secret's first model with Down syndrome. She joins 17 other women in the company's newest campaign."

Read

A woman with a pink shirt and heart-shaped rainbow-colored glasses
in a wheelchair.

Something big is happening in the fashion industry. Here is why I am excited about it

ABC

"As an adult, I'm seeing an inclusive new trend emerging in the fashion industry: accessible fashion. Not only is adaptive clothing moving to the mainstream, but models with disabilities are also increasingly represented. I couldn't be more excited."

Read

New Research on neurological complications of EDS!

Yellow background with an illustration of a spine. Text: Research by expert Dr. Klinge. Diseased filum terminal as a cause of tethered cord syndrome in
Ehlers-Danlos syndrome.

Diseased filum terminale as a cause of tethered cord syndrome in Ehlers-Danlos syndrome: histopathology, biomechanics, clinical presentation, and outcome of filum excision.

Jon Rodis shared this important new study by EDS & TC expert Dr. Klinge with us.

"Both, morphological findings, and biomechanics tests indicate limited elastic properties of the FT in hEDS, which is no more able to dampen but still transmitting spine movement related stretch forces."

The study is open access and free to read for everyone.

Read the study

Blue background and an illustration of a giraffe. Text: Research on CCI! Craniocervical Instability in Ehlers-Danlos Syndrom - a Systemic Review of
Diagnostic and Surgical Treatment Criteria

Craniocervical Instability in Ehlers-Danlos Syndrome - a Systemic Review of Diagnostic and Surgical Treatment Criteria

"There is a lack of high quality, prospective evidence regarding the evaluation of suspected CCI in patients with EDS. Based on our systemic review, we recommend that the CXA, Harris measurement, Grabb-Mapstone-Oakes measurement, and the angular displacement of C1 to C2 be used to evaluate suspected CCI in EDS patients."

This article is open access and free to read for everyone.

Read full study.

Work with us!?

Yellow background with a zebra sitting at a desk working on a computer. The zebra wears glasses. Text: Want to become part of our team? We are looking for
Volunteers: Journalists/Writers & Social Media Experts

Who: Chronic Pain Partners is looking for: Journalists, Writers, Bloggers & Social Media Managers (or people experienced with the above); students are welcome; people from the EDS/disability community are preferred.

Description: You will be closely working with the project leader to produce high-quality journalistic articles, reviews, opinion pieces, and more, all focusing on topics such as EDS, chronic illness and disability. Additionally, you will help curate this newsletter, put together social media posts and manage Chronic Pain Partners' accounts.

Skills needed: You should be able to speak and write English at a proficient level, have basic writing and interviewing skills, know how to create content for successful social media posts.

When: This position starts as soon as possible; you should be able to commit to at least six months with a minimum of eight hours per month.

We at Chronic Pain Partners work on a volunteer basis and provide free resources to the community. Want to be part of our team? Then send us an e-mail including a description of who you are or a resumé to [email protected].

Save The Date

A man with yellow glasses and a yellow tie and a pink shirt.

Free Webinar

Topic: 10 low-cost ways to improve symptoms of peripheral joint and spinal instabilities from hypermobile Ehlers-Danlos syndrome, including brain fatigue, pain, PoTS, MCAS and more.

Speaker: Ross A. Hauser, MD

Date: April 20, at 1.30 - 3.30 PM EST

SIGN UP

HERE