Channel Title: EDS Awareness Channel Description: Chronic Pain Partners/EDS Awareness, a US-based non-profit 501(c)(3) organization, was created in 2011 to support people with Ehlers-Danlos syndromes. It is an online resource for the Ehlers-Danlos Syndrome community, their caregivers, medical professionals, and everyone interested in learning more about the genetic connective tissue disorder. Chronic Pain Partners helps create independent, local EDS Support groups, hosts live webinars to help educate our members, caregivers and healthcare providers, and launched a CME program for physicians and another one for nurses, and lately, we have developed towards becoming a multimedia online magazine for people with varying chronic pain conditions, producing high-quality video content and documentary films as well as a monthly newsletter with original content only found on our website! Website: https://www.chronicpainpartners.com <video> We Are Visible Trailer 2 Description: We Are Visible is the debut feature film by filmmaker Karina Sturm, who lives with Ehlers-Danlos syndrome besides other conditions herself. We Are Visible was produced as a student project and features people with EDS and comorbid conditions around the globe. Chronic Pain Partners Production supported We Are Visible during the screening and distribution process, and the film is available on Chronic Pain Partners Vimeo channel for a small amount donated to Chronic Pain Partners. You can watch the full film here: https://vimeo.com/ondemand/wearevisible (The film is available in English and German. The English version is fully captioned and a version with descriptive audio is available too.) </video> <video> Lego Oma Trailer Description: Lego Oma is a 12-minute micro-budget short documentary about Rita Ebel, aka the Lego Oma, a German grandma and wheelchair user. Rita is a few decades old - the saying “age is just a number” couldn’t be more accurate than in this case - has been married three times - but who is counting? - loves to go water skiing and, generally, doesn’t step away from any athletic challenge. Since her car accident, which broke her lumbar spine and caused paralysis from her waist down, she constantly had to find creative ways to continue doing the things she loves, whether that is sports or activities taken for granted by non-disabled people, like shopping. When she noticed most of the stores in her hometown Hanau were inaccessible to her (and nobody was doing anything about it), she decided to make a statement by building wheelchair ramps from Lego, each a unique piece of art designed for a particular store. Her ramps are more than only tools to overcome physical barriers; they also raise awareness for accessibility and start conversations between different groups of people. This film tells Rita’s story, from her accident, over finding new ways to participate in sports while very much remaining the stubborn athlete she’s always been, to using Lego ramps to force non-disabled people to think about accessibility. More info: https://www.chronicpainpartners.com/lego-oma/ </video> <video> Proud Stutter (Trailer, HD) Description: Proud Stutter is a short film featuring Maya, who grew up with a stutter she believed she needed to overcome, embarking on a transformative journey of self-acceptance. Realizing that stuttering is simply another way of speaking, she creates a podcast to amplify the voices of those who share her experience. Through candid conversations, Maya creates a space where people who stutter can find strength, connection, and a voice. More information: www.chronicpainpartners.com </video> <video> We Are Visible Trailer 1 Description: We Are Visible is the debut feature film by filmmaker Karina Sturm, who lives with Ehlers-Danlos syndrome besides other conditions herself. We Are Visible was produced as a student project and features people with EDS and comorbid conditions around the globe. Chronic Pain Partners Production supported We Are Visible during the screening and distribution process, and the film is available on Chronic Pain Partners Productions’ Vimeo channel for a small amount donated to Chronic Pain Partners. You can watch the film here: https://vimeo.com/ondemand/wearevisible </video> <video> Sonny Mullen presents “A Guide to Medical Fundraising” Description: Sonny Mullen with Help, Hope and Live presents “A Guide to Medical Fundraising” </video> <video> Mast Cell Activation Disease Current Concepts Description: Mast Cell Activation Disease Current Concepts for Physician CME trainining </video> <video> We Are Visible (Too) - Episode 1: Sarah Rightmire Description: We Are Visible (Too) is an ongoing mini-film series portraying people with EDS all across the globe. In this mini-documentary series, we will continue on the We Are Visible – a feature-length film about people with EDS – journey and add a variety of 5 – 10 minute videos of other people across the country that live with Ehlers-Danlos syndrome to the channel. In Episode 1, Sarah Rightmire shares her EDS story. Sarah is a young woman with Ehlers-Danlos syndrome, mast cell activation, POTS and many other comorbid conditions who struggles with the stereotypes others have of her as an invisibly disabled young woman. She is 23 years old, currently finishing her psychology and disability studies degree at Chapman University and lives in Santa Ana, California. This video is part of our monthly Chronic Pain Partners Post, a newsletter featuring articles and videos about all things EDS. Please sign up for the newsletter here: https://www.chronicpainpartners.com/eds-awareness-educational-programs-and-newsletter/ [Accessibility information: All our videos are available with closed captions; some have descriptive audio, for example, the feature film We Are Visible in its original English version. Sarah’s film is only available with English captions. Written video description: At the beginning of the video, a text appears: Chronic Pain Partners presents We Are Visible (Too): Sarah’s Story. Then a short video with a black-and-white comic-like effect appears. In this video, Sarah, a woman with long, curly blonde hair, plays with her black dog. The dog kisses her face. The comic-like effect fades into a real-life video. In the next shot, Sarah sits on a white couch in her bedroom, with a bed in the background. She wears a red shirt and has brown eyes. Text: Sarah Rightmire, 23 years, Orange, CA. Before the second question, the same comic-like black-and-white effect appears, but this time Sarah sits quietly on her couch and looks into the distance. Text: How did you get diagnosed? Then the comic-like effect fades again. When Sarah talks about her EDS journey, a variety of pictures of her appear. A young Sarah on her bed, cuddling her dog; another young Sarah sitting on her bed; a family photo of Sarah, her brother and her parents; several photos of Sarah in a hospital bed and in a wheelchair. In between, we see Sarah’s interview in the same setting on the couch with a red shirt. After this question, we, again, see a comic-like black-and-white effect of a video with Sarah sitting on a couch cuddling a zebra pillow. Text: What’s the biggest challenge? Right after, we see interview footage of Sarah again. Later, we see Sarah sitting in her bed with a large box of medication in front of her, taking some of her meds. Then we see images of Sarah sitting in nature, Sarah at her graduation. After this question, we see a comic-like effect of the same video of Sarah cuddling her zebra pillow, just a closer look at her face. Text: What should people understand? It fades into a real-life video and then to the same interview setting again. Before the last question, we see Sarah from the side with the same comic-like effect. She has her zebra pillow on her lap. It fades into a real-life video and then to the interview setting. Text: What’s your biggest dream? In the end, a black and white comic-like illustration of a text on Sarah’s bedroom wall fades into the colored text: Wish, hope, dream, and then make it happen. Then a black screen appears with text: Learn more about Ehlers-Danlos Syndrome: www.chronicpainpartners.com] </video> <video> EDSed, Episode 1: The Norris Lab Description: In our first episode, we interviewed Dr. Gensemer and Dr. Norris, the driving forces behind the Norris Lab. Dr. Norris is a professor in the department of Regenerative Medicine and Cell Biology at MUSC. Dr. Gensemer achieved her PhD in the Norris Lab in 2022. Her current research is focused on the genetic and molecular mechanisms of hypermobile Ehlers-Danlos Syndrome (hEDS). In this interview, they talk about what the Norris Lab currently does and plans to do in the future, how they became this EDS powerhouse, why accessibility matters and what challenges female scientists with EDS face. [Accessibility information: All our videos are available with closed captions; some have descriptive audio, for example, the feature film We Are Visible in its original English version. The Norris Lab interview is only available with English captions. Video description: Two people are sitting in beige office chairs in front of a white wall. Dr. Gensemer is a woman with long, wavy blonde hair. She wears a blue shirt and white pants and has flower tattoos on her arm. Next to her sits Dr. Norris, a man with short brown hair, grey glasses, a blue shirt and a dark blue jacket on top. They answer the following questions: Can you tell us a little bit about your EDS journey? Did you always want to become a scientist? How did the Norris Lab come together? How did you recruit patients for the hEDS project? How did you handle the huge interest in your work? How did you end up becoming this EDS powerhouse? Tell me a bit about your advocacy supporting disabled scientists. What’s the biggest challenge as a scientist with EDS? What’s next? Any new projects in planning? How hard is it to keep the hEDS gene you found a secret?] </video> <video> EDSed, Episode 3: PT Elan Schneider on Neuroplasticity and New Chronic Pain Treatments Description: Widespread chronic pain is one of the main symptoms for people with any type of Ehlers-Danlos syndrome and can be debilitating. At the same time, many common treatment options, particularly with pain medication, lead to side effects. But what if we could reduce our pain without any negative consequences? Chronic Pain Partners' Editor-in-Chief Karina Sturm spoke with Dr. Elan Schneider, co-founder of the Retrain Pain Foundation and CEO of TrainPain, about neuroplasticity and how it can be used to develop new and innovative management options for chronic pain. Accessibility: Image Description: Interview between two people: Elan is a man wearing a blue and greenish shirt and white headphones. He has a full beard and wears glasses. In his background, there is an image of a lake and green and yellow trees. Karina is a woman with a short pixie cut and brown hair. She wears a blue shirt and large hoop earrings. </video> <video> We Are Visible (Too), Episode 2: Caitlin O'Donnell Description: We Are Visible (Too) is an ongoing mini-film series portraying people with EDS all across the globe. In this mini-documentary series, we will continue on the We Are Visible – a feature-length film about people with EDS – journey and add a variety of 5 – 10 minute videos of other people across the country that live with Ehlers-Danlos syndrome to our Chronic Pain Partners Production’ Vimeo channel. All films are produced by journalist and We Are Visible filmmaker Karina Sturm and sponsored by Chronic Pain Partners. In Episode 2, Caitlin O’Donnell shares her EDS story. Caitlin is an Occupational Therapist with Ehlers-Danlos syndrome, POTS and many other comorbid conditions from Santa Ana, California. In this video, Caitlin talks about her journey to finally getting diagnosed in 2021 and how her diagnosis explained her ancestors mysterious illness, including her mom’s who passed away shortly before Caitlin’s EDS diagnosis. Sign up to our Chronic Pain Partners Newsletter to get more content like this: https://www.chronicpainpartners.com/eds-awareness-educational-programs-and-newsletter/ Accessibility: Video Description: At the beginning of the video, a text appears: Chronic Pain Partners presents We Are Visible (Too): Caitlin’s Story. Then a short video sequence with a wider shot and then close-ups of Caitlin appear: The first shot shows an orange tree in the front with Caitlin’s face in the background. Then we see Caitlin leaning against a wooden shed behind the orange tree. Caitlin is a women with long red hair bound to a ponytail. She wears a blue shirt and looks somewhat serious. In the next shot, Caitlin sits on a chair in her backyard with a huge orange tree in the background with green leaves all over. The sun is shining. Caitlin has long red hair that flow over her shoulders on both sides. Text: Caitlin O’Donnell Santa Ana, CA. Another video sequence shows Caitlin leaning against the shed again and later lying on the ground in green grass with her hair spread widely across the grass. At the end, a black screen appears with text:Learn more about Ehlers-Danlos Syndrome: www.chronicpainpartners.com </video> <video> EDSed Episode 4: Dr. Jacqueline Wolf on EDS & GI Symptoms, Endometriosis Description: In episode 4, we talked with Dr. Jacqueline Wolf, a pioneer in the field of women’s gastroenterology. She is a physician at Beth Israel Deaconess Medical Center in Boston, and is Associate Professor of Medicine at Harvard Medical School. Her following has earned her praise as one of the "Top Doctors" by Boston Magazine, as well as listings in Who’s Who in America and Best Doctors in America guide. In this interview, Wolf gives insight into her research on EDS and other connective tissue disorders and their correlation to GI symptoms and endometriosis. She also talks about colonoscopy safety, what she learned from her Ehlers-Danlos patients, and why she doesn’t want to hear doctors ever say, “Well, dear, it’s just your period.” Accessibility: Video Description: At the beginning, two black screens with white and pink text appear: Chronic Pain Partners presents EDSed with Dr. Jacqueline Wolf on EDS & Gastrointestinal Symptoms & Endometriosis. Dr. Wolf, a woman with short, curly dark brown hair is sitting in an examination room, a small room with beige walls and medical equipment on the walls as well as blue gloves. Wolf wears a red shirt, a gold necklace, black glasses and a yellow face mask. In between, we see Karina, a woman with a short pixie cut, white shirt and pink face mask. She sits behind her camera in front of a window which shows we are up high. </video> <video> EDS Awareness Education Series Summary Description: </video> <video> Andrea Julian - EDS Leadership Program - Starting and Maintaining a successful support group Description: Andrea Julian is the Dayton Ohio Support Group Leader. Learn More at: https://leadeds.com/ </video> <video> EDSed, Episode 2: PT Dr. Lilian Holm Description: In episode 2, we talked with Dr. Lilian Holm, PT, DPT, who provides individualized Physical Therapy services as well as Health and Wellness Coaching, drawing on over 27 years of experience in many prestigious Chicagoland clinics. She has had the honor of facilitating the journey of numerous people toward health, well-being and a higher quality of life. She is passionate about providing care of the highest quality, and decided to go into private practice when she realized that the traditional clinical model didn't always allow the clinician to put patients and their needs first. Her unique approach incorporates physical therapy with a broader understanding of the human body and mind and lifestyle factors that are important and often necessary to achieve patient goals. In this interview, Holm shares her decades of experience in treating people with the Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders. She talks about what motivated her to become a physical therapist specializing in EDS, what approaches she uses to treat someone with the condition, and how people with EDS can reach their physical therapy goals. Accessibility: Video Description: At the beginning, two black screens with white and pink text appear: Chronic Pain Partners presents EDSed with Dr. Lilian Holm on EDS & Physical Therapy. Dr. Lilian Holm, a woman with shoulder-long brown hair and bangs, is sitting in her office, which is a large room with a turquoise wall behind her and an open fireplace. She sits on a beige chair and wears a black shirt and a delicate golden necklace. In the background is a treatment bench in the foreground two red flowers. Dr. Holm answers the following questions: As a medical professional, what motivated you to learn about EDS? What are the benefits or disadvantages of having EDS yourself as a PT? Why is it so important to find a PT who is knowledgeable about EDS? Can you describe what approach you use when treating someone with EDS? What treatment methods can help improve joint stability? What is the next step once core stability is accomplished? Is it possible for a person with EDS to be able to do “regular” sports, too? Is manual therapy good or bad for people with EDS? What other treatments/activities should people with EDS avoid? What influence do comorbid conditions have on the treatment outcome? What about Chiari, CCI and Tethered Cord? How much pain is normal during/after exercising? How long does it take to see improvement? What would a typical exercise protocol look like? How do I best work with a PT who is not (yet) an expert on EDS? What should PTs understand about people with EDS? If you could give only one piece of advice to the EDS community, what would that be? </video> <video> EDS Awareness Education Series Description: Live Webinar with Susannah Fox, Author of Rebel Health </video>

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Description

Chronic Pain Partners/EDS Awareness, a US-based non-profit 501(c)(3) organization, was created in 2011 to support people with Ehlers-Danlos syndromes. It is an online resource for the Ehlers-Danlos Syndrome community, their caregivers, medical professionals, and everyone interested in learning more about the genetic connective tissue disorder.

Chronic Pain Partners helps create independent, local EDS Support groups, hosts live webinars to help educate our members, caregivers and healthcare providers, and launched a CME program for physicians and another one for nurses, and lately, we have developed towards becoming a multimedia online magazine for people with varying chronic pain conditions, producing high-quality video content and documentary films as well as a monthly newsletter with original content only found on our website!

Website: https://www.chronicpainpartners.com

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