"The singer saw '100,000 doctors' before getting diagnosed with Ehlers-Danlos syndrome, Sjögren's syndrome, mast cell activation syndrome (MCAS), and postural orthostatic tachycardia syndrome (POTS)."

 

 

“There has been a growing commentary internationally from clinicians, organizations, institutions, and the community about whether the 2017 International Criteria for hEDS need modifying to be more inclusive of other signs and symptoms and comorbid conditions.”

 

"I stopped talking about my pain. I stopped going to doctors, too, and was uninsured for many years."

 

"I recently had my feeding tube changed. And I'm still traumatized by this experience because the doctor did not pay attention to my medical notes to understand that my feeding tube was stitched under my skin. So as he's pulling it out - I'm awake for this procedure - I'm telling him, "Hey, this hurts badly." I'm crying. And he said to me, "You're black. You're not supposed to feel that much pain!""

 

"I also remember as I was getting sick, I suddenly gained 40 pounds. That was one of the first symptoms of my CSF leak because my pituitary stopped working. I remember explaining to my boss at the time that I didn't feel good and was nauseous all the time. He said, "Are you sure you're not pregnant? Because when pretty Latinas gain weight, it's always because they're pregnant.""

 

"On this episode, Kate Skinner PT discusses her physical therapy practice and her unique perspective as a patient with EDS. Kate has a Doctorate in Physical Therapy and she currently practices as a physical therapist who specializes in the treatment of chronic pain and hypermobility."

 

“The characteristics of a medical child abuser can look an awfully lot like the same traits of a rare disease parent. Therefore, it is extremely important for this problem of false MCA accusations to be elevated because rare disease patient norms, frustration, stress and trauma behaviors are being pathologized and surprisingly often by physicians with no psychological degree.”

 

 

"Caet also details how her backcountry goals have shifted since being diagnosed with hypermobile Ehlers-Danlos syndrome, how she manages EDS, and why she thinks it’s important to be vocal about this chronic condition."

 

"That's because O'Rourke has firsthand experience living with poorly understood chronic conditions. That has made her sensitive to the struggles of patients living with hard-to-diagnose diseases who often have had their symptoms dismissed by a medical system that can't pin them down."

 

"Researchers at Massachusetts General Hospital (MGH) reported during a survey they found that more than a third knew little or nothing about their legal requirements as illustrated in the ADA and more than 70 % did not know who determines the 'reasonable accommodations' required to provide equitable care to people with disabilities." 

 

"But I didn't start this journey from a place of comfort and happiness. In fact, I started posting selfies for a very different reason altogether: to defy online trolls."

 

"'Being Deaf assigned me a battle,' said the model, producer and now writer. His memoir braids his life, his family's legacy and the history of Deaf rights."

Jon Rodis shared this interesting article with us.

 

"In this review, we focus on mast cell activation syndrome and impaired wound healing, comorbidities associated with the classical type (cEDS) and the hypermobile type (hEDS), respectively, and discuss potential mechanobiological pathways involved in the comorbidities." 

 

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

 

Read full study. 

"Ehlers-Danlos syndrome, POTS, and MTS may interact synergistically to exacerbate symptoms. Patients with EDS should be evaluated for possible POTS and pelvic venous complications."

 

Read full study. 

Jon Rodis shared this important research with us.

 

"Participation in this study involves a one-time electronic survey that takes about 30 - 40 minutes and could make a difference for the understanding of how eating disorders, and gastrointestinal symptoms/disorders are all interconnected. 

 

If you have any questions regarding this research study, please contact: kstaller@mgh.harvard.edu

 

Link to Survey:

 

Read full study. 

Jon Rodis shared this important registry with us. 

 

"How much of a burden do head and neck pain pose in patients with disorders at the cranio-cervical junction? A patient registry by the Bobby Jones Chiari & Syringomyelia Foundation. 

 

The registry can be found 

 

HERE.