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Ehlers-Danlos Syndrome

@eds__awareness

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Raising awareness for Ehlers-Danlos Syndrome and all the new research🤍🖤🤍

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Reintroducing me! 🤍

Hi all! I know it’s been a while (understatement of the century) since I last posted, but I’m hoping to come back full swinging! My health has been very problematic the last few years and with my masters almost complete, my ADHD has decided to fixate on this account 🤍🤣

This month is EDS awareness month so expect a lot of posting, and I will be using my access to research databases to explore the newest research into EDS! by @eds__awareness

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6 months ago

1️⃣ Who has seen this article?

2️⃣ How dare they post this?

‼️Warning: long post ‼️

Firstly, why is this article focusing on young women and not young men? Is this because if a young man uses a walking stick, it’s needed, but if a young woman does, it’s a fashion/ social media trend?

The pure audacity and ableism of this article is astounding. Nobody has the right to accuse anybody of not having a disability, especially somebody without a medical education. Let’s go into the supposed ‘claims’ of this article:

Claim 1️⃣: Mobility aids are the new ‘hot accessories’ on social media, and the majority don’t need them. This is absolute rubbish; personally, I follow many influencers who match their walking sticks to their clothing, and I have never thought they must be faking. It’s such a niche thing; why would anybody make a social media page based around mobility aids if they don’t need them? Common sense is clearly lacking in this article. These influencers bring joy and encourage young women not to be ashamed of walking sticks, which many have previously felt. Me included! I needed a walking stick years before I got one, and it was through social conditioning that I made my health worse.

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Claim 2️⃣: Legitimate medical conditions and symptoms are ‘just’ anxiety, not physical disabilities. This is ridiculous. The author presumes that medical diagnoses aren’t made by ACTUAL doctors through multiple tests. This author is clearly confused. Yes, there is an increased number of young women using walking sticks; nobody is disputing that, but not because they’re faking it, but because of increased awareness and education about certain conditions. After all, that’s what this page is about: spreading awareness for EDS!

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Claim 3️⃣: Disabled people need to be seen as ‘completely’ disabled to be given access and accommodations. Just because a young woman dresses nicely or does their makeup does not mean that they are able-bodied; that is ridiculous! Nobody has the right to tell me that because of how I present myself, I’m less disabled, and that’s the same for everybody else!

⚪️⚪️⚪️

Back to common sense – more young women are using mobility aids – why? Maybe it by @eds__awareness

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2 months ago

Finding these proteins is a step in the right direction! The paper, which has just come out ( 2025 ) highlights differentially expressed plasma proteins between a ‘healthy’ person and a person with hEDS

35 proteins were found to be differentially expressed :

* ~43% were linked to the complement system (immune pathways)
* ~80% were linked to the immune / inflammatory and coagulation pathways

This may help explain symptoms that faulty collagen alone can’t:

* Fatigue
* ‘Flu-like’ discomfort
* Widespread pain sensitivity
* Dysautonomia
* Mast - cell activation symptoms

Why this matters?:

Follow-up research can use these proteins as biomarkers and if successful, may lead to a diagnostic blood test!

If the complement system is shown to be dysregulated in hEDS, targeted therapies affecting these pathways could theoretically help, which may help to reduce pain and fatigue.

Diagnosis of hEDS has always relied on clinical criteria and physical and invisible symptoms. This shows that there is measurable, systemic biological activity associated with hEDS which supports that it is not ‘just’ about being hypermobile. This will help reduce medical gaslighting that many hEDS patients face on a daily basis.

❕It’s also important to remember that this study was on blood protein levels , not direct immune-cell behaviour. ❕

#ehlersdanlossyndrome #ehlersdanlosawareness #hypermobilityspectrumdisorders #hypermobileehlersdanlossyndrome by @eds__awareness

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5 months ago

May is EDS & HSD Awareness month!!!

There are multiple different ways you can get involved, and the links mentioned are in my bio! 🦓

#makemaymatter #eds #ehlersdanlossyndrome #ehlersdanlosawareness #hypermobilityspectrumdisorder by @eds__awareness

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6 months ago

Today, I graduated top of my class from Keele University with Cell and Tissue Engineering BSc. It took me 5 years instead of the traditional 3, but I don’t regret that at all.

With one leave of absence, two major surgeries and many dislocations, I wasn’t sure I would make it. Yet in the end, I graduated with a first, best student overall and best research presentation (osteoarthritis 🤔).

My aim now is a masters in Trauma Science to lead me onto a PhD into Ehlers-Danlos. It might take longer than expected, but graduating today is proof that no matter how ill we are, there is always hope. And if it takes longer, who’s counting? 🎉🤍

P.s. Now I have free time, expect more posts!! 🦓

#ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosawareness #ehlersdanlossyndromeawareness taken in Keele University by @eds__awareness

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2 years ago

Did you know that there is a link between EDS and ADHD?

ADHD stands for Attention Deficit Hyperactivity Disorder, with symptoms including;

🤍 Short attention span
🤍Impulsivity
🤍Inattentiveness
🤍Listening difficulties
🤍Getting easily overwhelmed

Whilst these are the main symptoms, there are loads of other ones, many overlapping with Autism.

🦓🦓🦓

Personally, I was diagnosed last year with ADHD after years of struggling, not only with symptoms but with trying to get a diagnosis.

This is one of the main reasons why this account has been so inactive over the last few years, and I will try and get this account back to what it was 🤍

Also - As a Bioengineering student, I have access and understanding of many of the new EDS research papers, and I will aim to focus on these new advancements 🤍🦓🖤

#eds #edsawarenessmonth #ehlersdanlosawareness #edswarrior #ehlersdanlossyndromes #ehlersdanlossyndromeawareness by @eds__awareness

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3 years ago

Today is Rare Disease Day!

Ehlers-Danlos Syndrome has always been classed as a rare disease, with the prevalence dependant on the type. For hEDS, it is estimated that 1 in 5000 people are affected, whilst for vEDS it’s 1 in 100,000-200,000!

Do you know what the threshold is for a condition to be classed as rare? 1 in ________?

🦓🤍🖤🤍🖤🤍🦓

#ehlersdanlossyndrome #eds #ehlersdanlosawareness #hypermobileedswarrior #edswarrior #raredisease #rarediseaseawareness #rarediseaseday by @eds__awareness

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3 years ago

BMI is a tool used to diagnose obesity. It is ableist and does more harm than good. Despite these reasons why BMI is harmful, healthcare providers around the world still use it.

I have linked in one of the sources I used for this in the link in my bio 🤍

#edsawareness #edsawarenessmonth by @eds__awareness

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4 years ago

May is EDS Awareness Month 🤍
@ehlersdanlosuk have created an amazing tool to personalise your own graphic. This is mine and my story 🤍

I will hopefully be posting a lot more as I finish uni soon, so will have more time 🤍 Thank you for staying with me 🖤 by @eds__awareness

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4 years ago

Products I use that aid me with my EDS ⭐️

This is subjective and therefore something that works for me, might not work for you🤍

1. Hemp Cream for Joint Pain ⭐️⭐️⭐️⭐️

This is a gel that acts fast, and is soothing for joint pain. Because it is a gel, I personally have not had any reaction to this. My skin is quite sensitive; so I was surprised that it didn’t leave a reaction. It didn’t get rid of my joint pain, but it did sooth it and offer some relief. It is promoted as being “long lasting” , but for me it lasted an hour at most, but it did provide relief. 🤍

2. Tiger Balm for Muscle Relief ⭐️⭐️⭐️

This is a herbal ointment that you apply for effective pain relief. Personally, it provided some relief but not a lot. It also caused a slight rash on my skin and I was quite sensitive to the smell. Overall I think it’s good, but it’s not my preferred balm for ointment.

3. Nivea MicellAIR Skin Breathe Micellar Water ⭐️⭐️⭐️⭐️

This makeup remover is great for sensitive skin. It has 0% residue and is fragrance free. I have had reactions to many makeup removers in the past, but I have no reaction to this. It feels light on the skin.

4. Arnica Salve Cream for bruises ⭐️⭐️⭐️⭐️⭐️

This is the only product I have rated 5 stars. It has anti-inflammatory properties and it helps brings bruises out. I use this product a lot when I’ve bumped into stuff/ dislocated joints and it’s great for bringing out the bruises early. It can also be used for relieving muscle aches, and it works great for everything.

5. PenAgain a pen that helps fingers that dislocate easily ⭐️⭐️⭐️⭐️

This is a comfortable pen that helps relieves finger pain when writing. I use this pen quite a lot as I don’t have pain when using it and it also has the added benefit of helping my wrist. It comes with extra refill replacements and it’s great for long-term note taking.

I’ve put all the links to the products in my bio 🤍 by @eds__awareness

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5 years ago

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5 years ago

Pt 2!

The spoon theory is an amazing theory and helps explain chronic illness to non-ill people.

The theory was coined by Christine Miserandino, a writer living with Lupus. She came up with it as a way to explain to her friends where her energy has gone.

The theory explains how people who live with chronic illnesses have to ration their energy to complete tasks.

The spoons represent the limited amount of energy we have.

The term spoonie comes from this, and is explained amazingly by @spoonie_village .

Did you know about this theory? How do you use your spoons?

🤍🤍🤍🦓🖤🦓🤍🤍🤍
#ehlersdanlossyndrome #ehlersdanlosawareness #ehlersdanlos by @eds__awareness

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5 years ago