This is what EDS looks like

https://www.jillandrewmpp.ca/give_ontarians_with_ehlers_danlos_syndrome_their_life_back_invest_now?recruiter_id=334697

Give Ontarians with Ehlers Danlos Syndrome Their Life Back: Invest Now! MPP, Toronto–St. Paul's

Meet ‘the Zeen’: Philly inventor behind the Steadicam creates wheelchair-walker hybrid

Meet 'the Zeen': Philly inventor behind the Steadicam creates wheelchair-walker hybrid Nearly 50 years ago, Garrett Brown invented the Steadicam for motion picture filming. Today, he’s using his skills to give people more mobility options.

Gastroparesis can occur in patients with autoimmune conditions. Gastroparesis means partial paralysis of the stomach. It is a disease in which your stomach cannot empty itself of food in a normal way from damaged nerves and muscles that don't function with their normal strength and coordination, slowing the movement of contents through the digestive system.

When we take a brief look at EDS History, DID YOU KNOW that EDS is one of the oldest known causes of bruising and bleeding. It was first described by Hippocrates in 400 BC. In 1901, Edvard Ehlers recognized the condition as a distinct entity.

Tinnitus Seems to Be Somehow Linked to a Crucial Bodily Function, Studies Hint Around 15 percent of the world's population suffers from tinnitus, a condition which causes someone to hear a sound (such as ringing or buzzing) without any external source. It's often associated with hearing loss.

New study from Stanford & Harvard finds that 63% of patients have phosphorylated alpha-synuclein (p-syn) deposition in their small fiber nerves. This is a biomarker associated with Parkinson's disease and other neurodegenerative disorders. There is prior research suggesting p-syn accumulation in the nervous system can be triggered by infections. While this is a small study (5 of 8 Long COVID patients tested had p-syn), the results suggests we urgently need more research on the role of p-syn in Long COVID and POTS. P-syn is not found in healthy people, but it has been reported in other POTS patients unrelated to COVID in a prior study.

This research was funded by Dysautonomia International. You can help support more innovative research by making a contribution at CureDys.org. You can target your donation to the POTS Research Fund, Dysautonomia Research Fund or Long COVID Research Fund, depending on what area of dysautonomia research interests you most.

We will have a presentation on this study and other dysautonomia research updates during Dysautonomia International's 10th Annual Conference, Collaborating for Cures, being held virtually this summer. Register at bit.ly/DysConf_2022.

While it can be frightening to learn that Long COVID POTS may have a relationship with biomarkers found in neurodegenerative disorders, there is hope. Parkinson's research gets hundreds of millions of dollars of federal and private research funding each year, and one of the top priorities in Parkinson's research is studying treatments that can prevent the accumulation of p-syn in the nervous system. That research is already taking place in the Parkinson's. Future research should include studying those treatments in POTS and Long COVID patients who have p-syn.

Read the new Stanford & Harvard study on p-syn in Long COVID POTS here: https://link.springer.com/article/10.1007/s10286-022-00867-0

Halsey Gives Fans Intimate & Detailed Health Update Before Touring | iHeart Halsey shared how they've been dealing with new health complications while gearing up for their Love and Power Tour. | iHeart

This recent editorial from the Stanford autonomic team summarizes new research published by other centers on glucose regulation in POTS, treatment approaches for initial orthostatic hypotension, and neuromodulation for treatment resistant hypertension:
https://link.springer.com/article/10.1007/s10286-022-00863-4.

Dysautonomia International funded the glucose regulation in POTS study, led by Dr. Shibao at Vanderbilt. Check out the summary here: https://www.ahajournals.org/doi/10.1161/HYPERTENSIONAHA.121.17852.

Please consider donating to Dysautonomia International’s POTS Research Fund to help us find more effective treatments for POTS. All donations go directly to POTS research: CurePOTS.org.

May is
Ehlers-Danlos Syndrome
Awareness month.

Please help me by trying to learn at least one new thing about this degenerative connective tissue disease that you didn't already know before.

Just for Fun: I'd love for you to come back and comment what you were able to find out about
Ehlers-Danlos Syndrome. We all learn from each other.
❤😁 Thank you 😁❤

I wish our eyes could see what microscopes can see; maybe then I and so many other souls with Ehlers-Danlos Syndrome wouldn’t be gaslit and told it’s in our heads. The reality is...it’s actually “in” our collagen. This is what collagen looks like under a microscope—on the left is ‘normal’ collagen, and on the right is what my collagen looks like because of Ehlers-Danlos Syndrome.

Ehlers-Danlos Syndrome is a connective tissue disorder that causes faulty collagen; collagen is the most abundance protein in the human body and is the “glue” that holds the body together. Collagen is literally essential to every system in the body & there are 4 types of collagen—

Type I provides the structure to skin, bones, tendons, connective tissue, fibrous cartilage and teeth; Type II cushions the joints and is found in elastic cartilage; Type III supports the structure of muscles, organs, and arteries; Type IV is found in the layers of skin and helps with filtration.

This is why many with Ehlers-Danlos Syndrome also live with other comorbid conditions—POTS, MCAS, Gastroparesis, Chronic Migraine, IBS, Fibromyalgia, hernias, Dental issues, bladder disorders, scoliosis, and chronic fatigue syndrome are just *a few* of the other illnesses that can come along with EDS.

https://pubmed.ncbi.nlm.nih.gov/23051630/

[ID—a picture is taped to a piece of watercolor paper that is splashed with black ink and gold glitter; the picture shows a comparison of collagen between someone with EDS and someone without. The pic on the left reads ‘normal’ with red font; the collagen looks thick. The pic on the right reads “EDS” in red font; the collagen is noticeably thinner and resembles spider webs. Marie’s Instagram .a.r.e.advoc8 is written below the picture on the bottom right.]

Research on the role of vagus nerve stimulation in reducing inflammation and autoimmunity across a wide range of medical condtions continues to advance. This journal article summarizes current insights into the role of vagal and other neural pathways in immune regulation: academic.oup.com/intimm/article/34/2/107/6366295.

Dysautonomia International will hear presentations from researchers working on new vagus nerve stimulation research in POTS during our 10th Annual Conference, July 14-17. Learn more or register at dysautonomiainternational.org/dysconf2022.

The idea that natural killer cells – long the object of study in ME/CFS – might be a major cause of pain in FM was a bit jaw-dropping. The authors, though, have produced a nice model: damaged sensory nerve fibers emit a substance that draws NK cells to them – and causes the NK cells to attack them – causing pain and sensory issues. Those NK cells appear to be on edge – and are ready to attack at the slightest provocation. The “wired and tired”, or exhausted, profile of the NK cells seems to fit well with what we know is happening in ME/CFS.

https://www.healthrising.org/blog/2022/04/29/natural-killer-small-nerve-fibers-fibromyalgia/

Immune Cells May Be Killing the Small Nerve Fibers in Fibromyalgia - Health Rising Immune cells called natural killer cells may be killing the small nerve fibers found in the skin, eyes and elsewhere in fibromyalgia.

This article reviews literature on idiopathic hypersomnia and sleep disturbances in POTS. It also includes a case report on a patient with idiopathic hypersomnia and POTS who saw improvement in her symptoms with IVIG and Adderall.
Read the full article here: http://ow.ly/cOY650IQCyb

Ever wondered why you feel so bad after eating a high carb meal? New research from Vanderbilt University funded by Dysautonomia International found that glucose (carbohydrate) intake worsened standing tachycardia in POTS, resulted in excessive levels of gastrointestinal peptide (GIP), which is a vasodilator, as well as excessive insulin levels in the blood. The researchers also report that POTS patients had evidence of insulin resistance, which is a known consequence of elevated sympathetic nervous system activity. The researchers note that in other studies, reducing the sympathetic nervous system activity led to an improvement in insulin resistance.

Check out the abstract here:
http://ow.ly/9oLE50IgEBa

Dr. Shibao presented on this topic during Dysautonomia International’s 2020 Conference: http://ow.ly/x7p250IgEB9.

Great news, as a result of this study, Dr. Shiabo was able to secure a larger NIH grant she will use to try to develop a new POTS treatment focused on addressing the glucose regulation problem.

You can help us fund more POTS research by making a contribution at CurePOTS.org.

www.ncbi.nlm.nih.gov

Guess who else is in our ranks.

Meghan Markle could have ‘early labor’ due to her unique genetic condition, say experts Meghan Markle has an unusual genetic condition that has been linked to early labour

I wish our eyes could see what microscopes can see; maybe then I and so many other souls with Ehlers-Danlos Syndrome wouldn’t be gaslit and told it’s in our heads. The reality is...it’s actually “in” our collagen. This is what collagen looks like under a microscope—on the left is ‘normal’ collagen, and on the right is what my collagen looks like because of Ehlers-Danlos Syndrome.

Ehlers-Danlos Syndrome is a connective tissue disorder that causes faulty collagen; collagen is the most abundance protein in the human body and is the “glue” that holds the body together. Collagen is literally essential to every system in the body & there are 4 types of collagen—

Type I provides the structure to skin, bones, tendons, connective tissue, fibrous cartilage and teeth; Type II cushions the joints and is found in elastic cartilage; Type III supports the structure of muscles, organs, and arteries; Type IV is found in the layers of skin and helps with filtration.

This is why many with Ehlers-Danlos Syndrome also live with other comorbid conditions—POTS, MCAS, Gastroparesis, Chronic Migraine, IBS, Fibromyalgia, hernias, Dental issues, bladder disorders, scoliosis, and chronic fatigue syndrome are just *a few* of the other illnesses that can come along with EDS.

https://pubmed.ncbi.nlm.nih.gov/23051630/

[ID—a picture is taped to a piece of watercolor paper that is splashed with black ink and gold glitter; the picture shows a comparison of collagen between someone with EDS and someone without. The pic on the left reads ‘normal’ with red font; the collagen looks thick. The pic on the right reads “EDS” in red font; the collagen is noticeably thinner and resembles spider webs. Marie’s Instagram .a.r.e.advoc8 is written below the picture on the bottom right.]

Nil-by-mouth foodie: The chef who will never eat again Loretta Harmes hasn't eaten or tasted food for six years, but she hasn't lost her passion for cooking.