EHLERS DANLOS SYNDROME - INDIA FOUNDATION (EDS-IF), an alliance partner with EHLERS DANLOS SOCIETY. The EDS – IF is a “member” of EDS and HSD Global Alliance.

EDS-IF is a group created for people having connective tissue disorderness Ehlers-Danlos Syndrome (EDS). Ehlers-Danlos Syndrome (EDS) is a collection of connective tissue disorders, defined by genetic defects in collagen and extracellular matrix (ECM) proteins which leads to joint hypermobility, skin fragility, and vascular complications. EDS leads to NEURO INFLAMMATION, NEURO IMMUNE DYSREGULATION, NEURO PSYCHIATRIC, GUT-BRAIN AXIS DYSFUNCTION and AUTONOMIC NERVOUS SYSTEM DYSFUNCTIONS issues.

Ehlers-Danlos Syndrome IS a Heritable Disorder of Connective Tissue. Ehlers-Danlos Syndrome IS NOT an Autoimmune Connective Tissue Disorder (Likewise, Ehlers-Danlos Syndrome IS NOT a Systemic Autoimmune Disorder or a Collagen Vascular Disorder.). Ehlers-Danlos Syndrome IS NOT a connective tissue disorder arising from dietary deficiencies. 

The EHLERS DANLOS SYNDROME (EDS) symptoms may include loose joints, joint pain, stretchy skin, abnormal scar formation and many. These can be noticed at birth or in early childhood or later stage in life. Ehlers-Danlos syndrome affects connective tissue, primarily the skin, joints and blood vessel walls. Symptoms includes overly flexible joints that can dislocate, and skin that's translucent, elastic and bruises easily. In some cases, there may be dilation and even rupture of major blood vessels.

Many clinicians lack reasonable knowledge of EDS, its associated conditions, or patterns of clinical progression and have little or no direct clinical experience with EDS diagnosis or care. Clinicians very often focus entirely on individual issues ("the trees") — e.g. hypermobility, cutaneous, gastrointestinal, vascular, or autonomic concerns — and fail to acknowledge the disorder as a whole ("the forest"). Clinicians who are unfamiliar with the existing body of knowledge regarding Ehlers-Danlos Syndrome are unaware of a predictable progression of the disorder throughout the phases of life. Clinicians may recognize discrete issues experienced by persons with EDS but fail to consider them interconnected. Mostly clinicians literally refuse to acknowledge EDS as a multisystem disorder. Often, multiple physicians are involved, each seeing only the discrete issue for which they are consulted.

The Ehlers-Danlos syndromes (EDS) are currently classified into thirteen subtypes. Each EDS subtype has a set of clinical criteria that help guide diagnosis; a patient’s physical signs and symptoms will be matched up to the major and minor criteria to identify the subtype that is the most complete fit. There is substantial symptom overlap between the EDS subtypes and the other connective tissue disorders including hypermobility spectrum disorders, as well as a lot of variability, so a definitive diagnosis for all the EDS subtypes when the gene mutation is known—all but hypermobile EDS (hEDS)—also calls for confirmation by testing to identify the responsible variant for the gene affected in each subtype. All twelve EDS types are diagnosed through WHOLE EXOME SEQUENCING (WES) genetic test but only hEDS is clinically diagnosed.  Diagnosis can be difficult or time consuming, often taking years, as symptoms may be dismissed or confused with other conditions so having  an early diagnosis is highly important.

EDS treatment is highly symptomatic and focused on managing symptoms, preventing complications, and improving quality of life. Since EDS affects multiple systems, a multidisciplinary team is usually involved, including rheumatologists, pain management, geneticists, physical/occupational therapists, and specialists in orthopedics, cardiology, gastroenterology  or neurology.  Ehlers Danlos Syndrome is 'treatable' and highly manageable symptomatically. The 'EHLERS DANLOS SYNDROME - INDIA FOUNDATION (EDS-IF)' has "360-degree" information in managing EDS / HSD remarkable issues.

EDS is not generally considered a progressive syndrome in that it does not tend to get worse in a linear manner over time. However, the symptoms and complications of EDS could become more pronounced as a person ages, leading to the perception that it is progressive. This is particularly true if we have not had the appropriate care and treatments in earlier years. This is why it is highly advocated strongly in having an early diagnosis and early intervention to improve patient outcomes. Maximum EDS comorbidities results from neck (viz. Cervicopathy) and Gut-Brain axis dysfunctional. If an early care can be given on both Cervicopathy and Gut-Brain axis dysfunctional than early betterment can be seen. If one can find ways to move that one love, help yourself to feel safe, and have positive manifestations than certainly one can improve so much as life progresses. Simply try being comfortable and accept what you have, certainly that would make you much happier and better at learning and growing.

This EDS-IF group has seasoned DOCTORS from the DEPT(s) of ALLERGY, FOOD NUTRITIONIST, INTERNAL MEDICINE, CARDIOLOGY, NEURO - CARDIOLOGY, ENDOCRINOLOGY, GASTROENTEROLOGY, GENETICS, GYNAECOLOGY, IMMUNOLOGY, OTOLARYNGOLY, PAIN MANAGEMENT, PHYSICAL MEDICINE & REHABILITATION (PMR), PHYSIOTHERAPY, NEUROLOGY, NEURO - GASTROENTEROLOGY, NEURO - OPHTHALMOLOGY, ORTHOPAEDIC, ORTHODONTICS, RHEUMATOLOGY and UROGYNAECOLOGIST. The members here are free to discuss with all this DOCTORS / SPECIALISTS, and DOCTORS here do provides FREE of SERVICE to all EDS-IF members.

The EDS-IF has been mainly tailored for individuals with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), as well as the doctors, specialists, healthcare providers and caregivers who support their care, their health and well-being. It does prioritize the highest standards of care for ESD / HSD individuals.

Here, all the members has latest updates with MEDICINES, SUPPLEMENTS (ALTERNATIVE TREATMENTS), COMPLEMENTARY THERAPIES, DIET and MANAGEMENT TREATMENTS towards EDS. The members are free to share their experiences of their EDS. The support on EDS remarkable issues is 24 / 7 and 365 days.