EDS Research

📍TOPICS:

• Theoretically, a diet adequate in glycine, proline, lysine, and vitamin C (or supplementation) would support collagen biosynthesis. But no established research or clinical experience has proven that collagen supplementation is helpful for persons with EDS.   

• Formal research is lacking regarding the specific pathophysiology of how EDS affects nutritional status.

• Formal research is lacking regarding the specific pathophysiology of how EDS affects gut-related immunity.  

• Formal research is lacking regarding in understanding Mast Cell Activation Syndrome (MCAS) towards EDS / HSD remarkable issues people care, as mast cells are prevalent in connective tissues and their dysfunction can exacerbate the chronic pain, fatigue, and systemic symptoms common in EDS, especially the hypermobile type. Understanding the link would help explain multi-system complaints—including allergies, gastrointestinal issues, and brain fog—and improves treatment approaches, as managing mast cell activity can alleviate symptoms that are often missed.

• Formal research is lacking regarding the specific pathophysiology of how EDS affects Mast Cell Activation. 

• Being diagnosed with MCAS, one doesn’t have the right techniques of testing, treatment and medication? What are other possibilities in managing MCAS? 

• People with MCAS often react poorly to medications. There is no formal research which can say that the additives present in medicine does trigger reactions that make it feel like every medication is the problem.

• Formal scientific evidence and research is needed to establish that every EDS remarkable issues people needs to drink eight glasses of water a day. 

• Formal research is lacking regarding the specific pathophysiology behind many of the Gut-Brain Axis complications of EDS.

• Formal no research have been performed which prove that any particular diet modification or supplementation can directly address any of the heritable genetic defects underlying any of the defined types of EDS, or that any otherwise non-essential nutrient is essential to persons with EDS.

• Formal no research have been able to established a compound or compounds that all persons with a particular type of EDS must strictly avoid or eliminate altogether from their diet.

• Formal no research on medical foods are specifically labeled for dietary management of EDS, including nutritionally complete or incomplete formulas, formulas for metabolic disorders, or oral rehydration solutions. 

• Formal research had not been established to recommend that persons with connective tissue problems (including persons with Ehlers-Danlos Syndrome) need extra vitamin C and vitamin D, or larger amounts of certain minerals in their diet, as compared to persons without connective tissue problems. 

• There is no formal research about the mechanics of POTS and it's clinical management. 

• There is no formal research about segregating subtypes of POTS like - Neuropathic POTS, Hyperadrenergic / Adernal POTS, Hypovolemic POTS, Secondary POTS, Deconditioning POTS and Mixed Type POTS. 

• There is no formal research about the mechanics of overlapping of POTS sub types.

• There is no formal research which can claim that POTS is a Cardiovascular disorder or Neurological disorder or Respiratory disorder. 

• There is no formal research to claim that there is an abnormal connective tissue in the veins precipitating the venous pooling phenomenon, there is poor cerebral perfusion, and Sympathetic overdrive leading to dysautonomia or POTS. 

• A EDS remarkable issue person is having Endometriosis and she is blaming that during periods one has severe pain, dizziness, fatigueness during periods because of POTS. There is no formal research to say that - What came first: POTS, or undiagnosed endometriosis? 

• What if Dominant-Negative (DN) mutations is absent in vEDS? There is no formal research to claim that it still qualifies for vEDS.

• There is no formal research on - How is maintenance of blood pressure in the normal or low normal range and prevention of surges in blood pressure important for vEDS remarkable issues people?

• There is no formal research to claim or establish or deny that if Vagus (CN X) and Glossopharyngeal (CN IX) nerves dysfunction are major comorbidities or manifestations of EDS. 

• Formal scientific evidence and research is needed to establish that why EDS / HSD remarkable issues is more prone with females than males body. It's known with data that 85-90% females has EDS / HSD than 10-15% males.  

• Formal scientific evidence and research is needed to establish that EDS / HSD though it's features are symptomatically seen in different ages of life - before puberty (~ around 8-10 years), at the start of puberty (~13-14 years) and post puberty (~ around 25 years, post pregnancy, mid 40's years) than in which sinerio, what is the changes of being better with EDS / HSD symptoms either being lessen with symptoms or least pronounced as a person ages. EDS / HSD can't be considered a progressive syndrome as it does not tend to get worse in a linear manner over time. 

• Formal scientific evidence and research is needed to establish the root cause of Fibromyalgia (FM). 

• Formal scientific evidence and research is needed to establish that there is no direct relationship nor any proven scientific evidence that a person having Ehlers Danlos Syndrome (EDS) / Hypermobility Spectrum Disorder (HSD) will also have Fibromyalgia (FM).

• Formal scientific evidence and research is needed to establish if BLOOD TYPE DIET (BTD) in needed in managing Ehlers Danlos Syndrome (EDS) esp. for MCAS, POTS & Gastrointestinal management. 

• Formal scientific evidence and research is needed to establish that Why hEDS people have worst POTS symptoms than any other EDS SUB-TYPES. POTS are very much there with this EDS SUB-TYPES like hEDS. vEDS, cEDS & clEDS but hEDS people have worst POTS symptoms, followed by vEDS, than cEDS & minimal for clEDS. 

• Formal scientific evidence and research is needed to establish that CCI issues are more seen in EDS / HSD remarkable issues people whose EDS symptoms were triggered before 13 - 15 years of their age or before puberty. There are EDS / HSD remarkable issues people who don't have CCI issues but other comorbidities are there.

📍Research Funding:

The EDS-IF actively soliciting donations to fund research aimed at improving the diagnosis, treatment, and understanding of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Donations can be designated to the "EDS-IF" fund, which supports international, collaborative research initiatives. The research topics can be found in EDS-IF website in EDS Research page.

The EDS-IF welcomes research collaborations with industry, academia, and nonprofits through various channels, including sponsored research agreements, gift-funded projects, and, in some cases, joint research efforts. They facilitate partnerships across disciplines, particularly in EDS / HSD, healthcare, and use of AI with a strong focus on bridging academic research with real-world EDS / HSD diagnosis and treatments.