EDS Product Spot

The Pelvic Disorders Working Group of the International Consortium on Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD), has collaborated on a comprehensive publication of guidelines tailored for healthcare professionals, and individuals with hypermobile Ehlers-Danlos syndrome (hEDS) and HSD who are either pregnant or planning to become pregnant.

The guidelines are based on an extensive review of existing studies and individual case reports from various countries, considering factors such as risk assessment, symptom management, and outcomes during pregnancy, childbirth, and the postpartum period.

The Ehlers-Danlos Society has funded the publication's open access. Read more here: https://www.ehlers-danlos.com/management-of-childbearing-with-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders-a-scoping-review-and-expert-co-creation-of-evidence-based-clinical-guidelines/

“As a wife and working mom living with Ehlers-Danlos syndrome (EDS), it was an honor to apply to help bring awareness to the condition. My children have also been diagnosed with EDS, and my hope is that my grandchildren and others will not have to wait 35 years without a proper diagnosis, unlike myself.

“I have been misdiagnosed with other illnesses and even told that it's ‘all in my head’ like many others. My goal is to educate anyone who is willing to listen and learn until EDS and HSD are no longer unknown to so many.”

📜Thank you to LaShon Jackson-Johnson for taking part in the Proclamation Challenge and requesting a proclamation for Texas and the City of Keller; making May officially EDS and HSD Awareness Month in Texas, USA!

🎂It’s also LaShon’s birthday on May 1st, starting Awareness Month in the best way - please join us in saying Happy Birthday!⁠
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🦓 Get involved this May with the Acts of Awareness Challenges here: https://www.ehlers-danlos.com/may-awareness/

Really happy with this electrolyte so far. 0 sugar and I can usually get two to three glasses out of one pack.

https://a.co/d/hESBHaH

My kiddo tested for the markers for hEDS and she has been showing signs in other ways. Currently I’m experimenting with different shoes and inserts to help her feet/ legs- she complains often about leg pain.

So far, kids new balance wide shoes and kids ASICS seem to be the best fit - I tried about 10 different brands of shoes. Kidsole inserts provided the most support and Foot Logics 3/4 inserts look like they work well with the ASICS.

The photo below (left) is the new balance shoes + Kidsole inserts. There is a big different for her feet and knees compared to the photo on the right. the new balance are not as supportive on the sides as the ASICS so the heavy duty insoles work best.

Links below:

New Balance Unisex-Child Dynasoft Nitrel V5 Bungee Lace Running Shoe: https://amzn.to/3wRgW57

ASICS Kid's PRE Venture 9 Pre-School Running Shoes: https://amzn.to/4a0UXa2

Kidsole Inserts: https://amzn.to/3wRJXxl

Foot Logics Kids: https://amzn.to/43gr3fN

Anyone else get leg cramps? Or have legs that lock up? I’ve been getting them more at night, specifically during pregnancy. A friend recommended this product and it’s been a game changer:

Leg Massager with Air Compression for Circulation and Relaxation with Heat, Foot and Calf Massage Machine with Hand-held Controller-3 Modes 3 Intensities-Adjustable Leg Wraps for Home and Office Use Sejoy Foot Massager Machine with Heat, Electric Shiatsu Foot Massager, Massage with Air Compression, Relaxing Feet Care Massagers for Home and Office Use

Virtual tickets available!

Philadelphia, PA The Ehlers-Danlos Society is delighted to welcome you to register for our 2024 Global Learning Conference in Philadelphia, Pennsylvania, USA! We will be hosting this exciting hybrid event, both in-person and virtually. Join individuals and families with Ehlers-Danlos syndromes (EDS) and hypermobilit...

Muscle and leg cramps in are common, especially during pregnancy. Entering into my second trimester my leg muscles have been locking up and cramping at night- this happened with my first pregnancy too. So far, I’ve discovered that magnesium oil and cupping have been a good friend in this very uncomfortable symptom. Links below.

Silicone cupping set: https://amzn.to/3NemonF

Magnesium oil: https://amzn.to/3GrkkVE

Dysautonomia and blood pooling. ⁠
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"Sorry. These are pictures you probably don't want to see, & I'm sorry if they do leave you feeling uncomfortable, but I wanted to share them for awareness.⁠
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I have blood pooling and issues with my feet when it comes to standing or going from sitting to standing, and this is what it looks like.⁠
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The first photo on the left was taken as I stood still. The other photo on the right was taken 7 minutes later.⁠
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Standing still, that’s it.⁠
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They were tingling, they were starting to itch, & starting to get heavy. ⁠
Imagine what it’s like after standing in a queue, sitting for long periods, or even just a short journey in the car.⁠
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It affects my mobility and leaves me embarrassed because of how I have to walk until it corrects itself." ~ ⁠
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Many people with dysautonomia experience blood pooling, which occurs when blood collects in the legs and hands rather than being pumped back to the heart. ⁠
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Compression clothing is tight–fitting clothing that can help reduce blood pooling by pushing blood back toward the heart. There are many different types of compression clothing, including socks, stockings, leggings, full-body suits, and abdominal binders. ⁠
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Learn more at the link in the bio.

For Dysautonomia Awareness month I've created two different selfcare journals that are now available for purchase on Amazon. They have 95 blank pages for journaling / tracking symptoms etc and 5 pages in the back to record blood pressure readings.

Journal 1: https://a.co/d/g1eP8US

Journal 2: https://a.co/d/aKSAGVN

Dysautonomia Awareness Selfcare Journal Dysautonomia Awareness Selfcare Journal with blood pressure log in the back.

Prime Big Deal Days - check em’ out. Links below ⬇️

Nuun Electrolytes: https://amzn.to/46mx8I9

Ultima electrolytes: https://amzn.to/3rKZSvf

Calm Magnesium Supplement: https://amzn.to/48KkyUP

Foot roller & massage ball: https://amzn.to/3PSRSQM

Plantar Fasciitis Compression Socks: https://amzn.to/46qfoM0

Compression Ankle Support Socks: https://amzn.to/46IGuhd

Gaiam Essentials Thick Yoga Mat: https://amzn.to/48KP1lH

Restcloud Neck and Shoulder Relaxer: https://amzn.to/3rKslRQ

Cervical Pillow for Neck Pain: https://amzn.to/3rKmBYe

Seat cushion: https://amzn.to/48Fcip0

Share something (big or small) that's helped your mental health (a little or a lot).

Essentials restock came today. Links below 👇

Kinesiology Tape: https://amzn.to/3ZFXLW9
Epsom Salt: https://amzn.to/3ZLB2In
Electrolytes: https://amzn.to/3LLpkHK

Here are a few , not all are listed

My most worn brace - and it’s currently 25% off on Amazon @ $15: https://amzn.to/3ruXHfk

This back brace is a lifesaver any time I’ve got a lot chores to do around the house. Since I’ve started PT focused on stability, I haven’t had to rely on it as much. BUT being in early pregnancy my hips and low back are starting to get lax … and I’ve got some catch up to do around the house tonight. Remember, there is nothing wrong with needing to use bracing, mobility aides, or any other tools if they help you get through the day - whatever that looks like for you is OK. Give yourself a lot of grace in where you are at on any given day.

Copper Fit Advanced Back Pro Belt Compression Brace, Large/X-Large Get the Support Your Need CopperFit PRO is designed for athletes, weekend warriors or anyone with an active lifestyle seeking relief. CopperFit PRO is built tough to stand up to your most extreme training, but still comfortable enough for everyday wear. All Copper Fit products are made of high-qu...

These lightweight compression gloves are my go to for long work days. Check them out on Amazon here: https://amzn.to/3F2vfVa

19 - 25% off magic gel packs, limited time deal.

Limited-time deal: Magic Gel Ice Packs for Sports Injuries with Adjustable Wrap-Around Strap | Flexible Ice Pack Set for Muscle Pain, Sciatica Relief & More | Reusable Cold Compress Kit with Hot and Cold Packs Magic Gel Ice Packs for Sports Injuries with Adjustable Wrap-Around Strap | Flexible Ice Pack Set for Muscle Pain, Sciatica Relief & More | Reusable Cold Compress Kit with Hot and Cold Packs

Dysautonomia, also called autonomic dysfunction, is a group of disorders that affect the autonomic nervous system.

Many people with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) also have a type of dysautonomia. There are different types of dysautonomia with different symptoms.

People with EDS and HSD most commonly have a form of orthostatic intolerance. “Orthostasis” means to stand upright, so orthostatic intolerance refers to symptoms that occur due to standing up or being upright.

The two most common types of orthostatic intolerance are:

1️⃣ Orthostatic hypotension (OH) — low blood pressure on being upright.
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2️⃣ Postural orthostatic tachycardia syndrome (POTS) — an abnormal increase in heart rate when standing without a drop in blood pressure.

Symptoms of dysautonomia include: ⁠

● Tachycardia (fast heart rate)⁠
⁠● Palpitations (feeling the heart racing or pounding)
● Hypotension (low blood pressure)
● Lightheadedness
● Presyncope (a sense of being about to faint)
● Syncope (fainting)
● ⁠Blurred vision
⁠😶‍🌫️Brain fog (problems with concentration and memory)
● Headaches
⁠● Chest pain ⁠
⁠● Shakiness⁠
⁠💤Chronic fatigue
⁠● Exercise intolerance and feeling worse after exercise⁠
● Swelling and/or discoloration of the legs after standing for short periods of time
● Cold, discolored hands and feet⁠
⁠● Temperature dysregulation⁠
🥵 Sweating
● Sleep disturbance⁠
● Gastrointestinal issues
● Nausea
🚽Bladder dysfunction

Learn more about diagnosis and management here: https://www.ehlers-danlos.com/dysautonomia/

ASICS for $41 - $59 right now on Amazon.

ASICS Women's Gel-Venture 8 Running Shoes The GEL-VENTURE 8 running shoe is designed for the great outdoors. This versatile shoe is excellent for trail runs, light hiking or exploring a new city. This model has been updated with a more accommodating forefoot fit, while reducing the amount of overlays around the forefoot without sacrifici...

Most of us are deficient in magnesium. I use this spray after a shower or bath directly on painful joints- most often using this on the sacrum, back of the neck, and jaw. It is also a great product for painful periods for lower abdomen and back cramps.

You can find it on Amazon here: https://amzn.to/3PYN4Lc