Featuring new video on PT for EDS, Articles on new SFN research and self-care.
The Chronic Pain Partners Post
A news source by and for the EDS community.
New EDS Awareness
educational Videos!
EDSed, Episode 2: Dr. Lilian Holm on Physical Therapy & EDS
Chronic Pain Partners Post
In this newsletter, Holm shares her decades of experience in treating people with 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.
Small Fiber Neuropathy is a Common Feature in Hypermobile Ehlers-Danlos Syndrome, Research Finds
Chronic Pain Partners Post
New research by a German group of scientists published in the European Journal of Neurology seeks to understand if there is an underlying common cause among hypermobile EDS (hEDS), postural orthostatic tachycardia syndrome (POTS) and small fiber neuropathy (SFN). Their research sheds light on a possible common mechanism behind those three conditions.
Wrap Yourself in a Blanket of Love: How to Foster Self-Compassion
Chronic Pain Partners Post
Self-compassion and self-care are sometimes misunderstood as selfish, self-cherishing, or self-indulgent, but this couldn't be further from the truth, especially when you live with chronic illness or chronic pain such as Ehlers-Danlos syndrome (EDS). Self-compassion is the act of offering ourselves the same care and compassion we would give to others. It is simply
the fine art of being your own best friend. Sounds easy. But giving ourselves grace isn't always easy to do. So, we dedicated this month's topic to the month of love, February, to explore how to increase your self-love.
Billie Eilish: "I feel like my body was gaslighting me for years"
NME
"During a wide-ranging new interview with Vogue, Eilish talked about how a hip injury she sustained when she was 13 years old led to years of subsequent lower body injuries. Later, Eilish was diagnosed with hypermobility - a condition that causes joint issues, and in soma cases stiffness and pain.
Our Future: Billie Eilish on Climate Activism and Radical Hope
Vogue
"'I felt like my body was gaslighting me for years,' Eilish says. 'I had to go through a process of being like, My body is actually me. And it's not out to get me.'"
"This wheelchair buying guide offers insight into the buying process, from answering a few frequently asked questions - such as where to buy a wheelchair - to highlighting the most popular manual wheelchairs, the best options for seniors, and how to decide if a manual wheelchair is right for you."
Presentation and physical therapy management of upper cervical instability in patients with symptomatic generalized joint hypermobility: international expert consensus recommendations
"Experts in symptomatic
generalized joint hypermobility (S-GJH) agree that upper cervical instability (UCI) needs to be better recognized in S-GJH, which commonly presents in the clinic as generalized hypermobility spectrum disorders and hypermobile Ehlers-Danlos syndrome. While mild UCI may be common, it can still be impactful; though considerably less common, severe UCI can potentially be debilitating."
RNA-Seq of Dermal Fibroblasts from Patients with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Supports Their Categorization as a Single Entity with Involvement of Extracellular Matrix Degrading and Proinflammatory Pathomechanisms
"Based on these findings, we
propose a disease model in which an unbalanced ECM remodeling triggers a vicious cycle with a synergistic contribution of ECM degradation products and proinflammatory mediators leading to a functional impairment of different connective tissues reflecting the multisystemic presentation of hEDS/HSD patients."
