Samantha Lou Rare Resilience

29/03/2026

23/03/2026

The Science of "Bendy": Is the hEDS Genetic Mystery Solved? 🧬

If you’ve been told hEDS is "just being flexible," the science is finally catching up to prove otherwise. Researchers at The Norris Lab are peeling back the layers on why our connective tissue behaves differently.

The Breakthrough:

Scientists identified rare variants in the KLK15 gene (part of the kallikrein family) in some hEDS families. These genes act like "architects" for the extracellular matrix—the scaffolding that holds your cells together.

Why this is a Big Deal

• The Mouse Proof: When researchers gave mice this specific genetic tweak, the mice developed the same fragile skin and joint laxity we see in humans. This proves the gene isn't just a coincidence; it's a driver.

• Validation: It moves hEDS out of the "invisible illness" category and into the "molecular biology" category.

⚠️ The Fine Print (What you need to know):

1. There’s No Test Yet: You cannot go to your doctor today and ask for a "hEDS gene test." This research is still in the validation phase.

2. It’s a Piece of the Puzzle: hEDS is likely a "polygenic" or "heterogeneous" condition—meaning KLK15 might explain some cases, but other families might have different genetic and Epigenetic drivers

3. Diagnosis Remains Clinical: For now, your diagnosis still relies on the Beighton Score and the 2017 clinical checklist. (however, this is expected to be reviewed and updated in publications later in the year)

The Bottom Line:

We are moving closer to a future where hEDS is diagnosed with a simple blood draw rather than years of "medical gaslighting." Until then, your symptoms are real, your pain is valid, and the science is finally on your side.

~ Samantha 🦓💜

The Norris Lab

10/02/2026

Seen on paper

Days like today, I return to it,
Gaslighting smiles and hidden scripts.
I pay the cost to manage my care,
Jumping through hoops that vanish in air.

Tests and questions, vague replies,
A system built of silent lies.
Every “follow-up,” a winding trail,
Where answers vanish, and hope can fail.

Rules shift like sand beneath my feet,
Each visit a loop, answers incomplete.
I ache for care that sees and acts,
Not puzzles, delays and silent facts.

And in the quiet, I carry the ache-
The cost of a system that hides the stakes.

05/06/2025

So many of you have seen me with a broken heart
A hopeful heart
A fearful heart
A tired heart
A needy heart
But not many of you have seen me with a heart as full as this…

I always knew I was born to be a mum and becoming one to Jensen and Brooke at a young age fulfilled me and challenged me in ways I never knew possible.

I never quite got over the way my dream of creating a nuclear family got torn apart and becoming a single parent when they were still very young brought a whole new realm of challenges that we learned to navigate together.

Everything my illness and fight for survival put us through years later truly did make us stronger… closer… and more in tune with one another.
It pushed us beyond our limits and my mind and body went to places I’d only witnessed in films and TV.

It was really obvious to those of you who knew me during those years that the only thing that forced me to keep holding on was Jensen and Brooke. I use the word ‘forced’ intentionally because it wasn’t a choice; it was a trap.

Being their mum trapped me into fighting one more minute when I desperately wanted to give up. It left me no option but to show them that there were no limits to my love for them, so much so that even when I begged for relief from
the pain in any possible form, deep down I knew I’d fight against it if it came … and I bathed in the comfort of knowing that if sweet relief was to eventually wash over me; they both would know I’d done everything in my power to be with them & support them as they grew.

We eventually got through those years and not for one moment did I think I’d ever live the life that I get to live today.

I’ve said here before that I truly believed back then that when I chose the surgeries which could help me to survive that I’d never find true love. I thought it was the price I’d have to pay (outside of the 0.75 million dollar bills)…. No one would want someone like me.

It wasn’t a pity party; it was a harsh, painful, heart wrenching thought that I came to believe was a fact. I would never have the family life or love that I’d craved since I was a little girl because who would want the drama that my conditions bring…? or the way Id move differently post-surgery… who would take the risk loving me when the rest of my life will always hang in the balance, held together only by incredibly expensive medical promises thousands of miles from home.
To love me would be to accept a life of uncertainty … whilst at the same time living certain in the knowledge of an unnerving fight for my life or health again one day.

So this morning, I paused and I took this photo whilst on my first solo outing with my 6 week old daughter. The very daughter who doctors told me not to have. The child I was advised would be too much pressure for my body to continue to carry or deliver…. And yet through hard work, research, faith and determination it became the healthiest pregnancy and delivery I’ve ever had.

Having children whilst living with rare, complex and chronic health conditions isn’t an easy ride but to experience this next chapter of our journey with Jensen and Brooke in their teens and a fiancé who is more than a partner; he’s the glue… the calming reassurance…the supporter… the team mate… the dad that all our children deserve makes my heart so full it could burst at the seams.

So I paused for a moment this morning to capture my happiness today and to find the words to share this little truth with you because I know some of you will be in dark and difficult chapters right now and I need you to know that life has plans you can’t yet fathom and the days ahead will lead the way towards chapters you can only dream of; if only you can hold on.

~ Samantha 💜

26/04/2025

Anya Esme , our miracle baby was born 24.4.25 weighing 6lb 6oz

We’re doing brilliantly, enjoying exceeding all medical expectations and settling in amongst all the love of our family

I couldn’t be more grateful to be moving into this next chapter with everything I ever dreamed of and more.

- Samantha 💖

16/04/2025

Was very sad to wake up to the news that Dan has passed on yesterday.

Danny Dearden … Our local X-Factor star became a huge support during my own time of need. Not because he knew me personally… but because he saw a local stranger in need of help and he knew he could make a difference, so he did.

Danny showed his kindness in the way he chose to plan fabulous events & consequently fundraised thousands of pounds towards my life before he even knew me.

We got to know one another a little during that time and kept intouch beyond with the odd check in or update on one another’s lives which gradually became more infrequent - but it remained clear in the moments I knew him that he was much loved by so many people; reflecting the impact he made on the lives he touched - through both words and song inspite of what was happening in his own world

Rest easy now Dan 💝
Much love Sam x

Thanks for checking out my new single. If you have ever lost someone in your life, this one is for you X !P.s Don't forget to subscribe and share if you like...

08/02/2025

It also has various causes… and is super common in the EDS community. Whether that be due to long term stresses on the autonomic nervous system, hormone disruptions, lax connective tissue causing blood pooling in the lower regions or a variety of other potential causes (we’re all very different) … there’s many ways we can manage it to hopefully avoid it becoming so debilitating … and more often than not we become accustomed to small changes day to day which help us avoid fully passing out.

Queuing up in a shop is a bad one for me… and pregnancy certainly increases symptoms but proper hydration (with salts!), muscle tensing, wriggling, exercise and compression is super helpful!

30/01/2025

Hello all!
I’ve been a little quiet whilst I’ve focussed on myself, family, work, growing a human etc…. But I know my silence can worry some of you, more so with my pregnancy & I’m grateful for those of you who’ve reached out to check in on me so here’s a little update 😊

I do question how much value I’d bring if I was to give more regular updates on my life and so I guess that holds me back from more frequent posts. There’s a conflict within me- not wanting it to seem like I’ve healed (a loosely used word with EDS & large fusions!) and abandoned the community, versus ensuring I bring things of value to you all rather than statuses which can feel a little ‘me,me,me’.

There’s also an undeniable element to healing which makes me want to protect my little bubble and not feed into the parts of my identity that I’ve worked hard to ensure are no longer in the driving seat, such as illness & fear… and I find regularly engaging in conversation about my conditions can really play into that fear (of the future) at times. Having said that, I couldn’t possibly deny how very defining my experiences in recent years have been within my life and the person I am today, so if people do feel it’s helpful then I’ll try to be more conscious about sharing this.

Update: I’m just about reaching my 3rd trimester in a miracle pregnancy that I was sternly advised not to continue with by the medical community.

I came to a realisation in 2024 that I’ve only lived to regret the decisions I’ve made whilst in a fear-based mindset… and so we took a leap of faith and chose to trust in the body I’ve come to know so well.

Surprisingly, the pregnancy has been smooth sailing. Actually, I’d go as far to say that (so far) it’s been smoother sailing than the two previous pregnancies I had in my twenties pre-EDS diagnosis!

Writing those words awakens a dread inside of me and I hesitated over the letters as I typed them out. It can feel as though I’m tempting fate after such a long and arduous journey here… But I’m also working hard to avoid giving energy to those kinds of thoughts.

I’m managing to continue at the gym to minimise the impact of the increase in dislocations and instability that EDS and pregnancy hormones cause in unison.
It’s not easy but it’s do-able.
Past pregnancies landed me with a fractured pelvis and wheelchair due to these changes so I’m not expecting an easy ride the whole journey!

So far, I’ve also avoided the Obstetric Cholestasis and kidney issues which plagued my previous pregnancies and landed us with two early bambinos. It’s fully expected I’ll experience this again, but I have a fabulously attentive & highly skilled medical team 💞

The pregnancy is considered high risk, with ensuring both of our safety during delivery being our main challenge - but as I’ve said to my team ‘I’ll focus on growing this little one and staying physically strong and I’ll trust you to focus on keeping us safe when the time comes’.

Oh … I can’t end this update without recognising the sheer safety, joy and contentment that comes with experiencing a pregnancy with an incredibly supportive and loving man who makes me feel beautiful and supported everyday amidst all the crazy bodily changes (and the odd medical-trauma induced panic attack!) 🥰

It’s just the greatest experience, one I’m very grateful to have, alongside sharing this journey with Jensen & Brooke 🥰

So that’s where we’re at!

Trust & faith with a sprinkle of hope for good measure!

~ Sam 💞

31/12/2024

🎈Wishing you all a happy & healthy
New year 🥳

Thanks for your continued love & support

And please remember…. if life isn’t quite where you want it to be or you feel like you’re taking hit after hit…. Hold on, reach out to others and be kind to yourself because life is far from predictable and the future holds so many possibilities….I promise.

Much love ….

~Sam & Bump

24/12/2024

Through all the chaos and the magic-making I hope you’re able to take a moment to breathe, catch yourself.

To slow down and enjoy little moments because your family won’t remember ‘the most perfect Christmas’ …

But they will remember how they felt… the laughter, the warmth and the happiness of being together

So from my team to yours we wish you a present and joyful Christmas!

~ Samantha 💕🎄🥳

12/11/2024

Question for the EDS’ers amongst us…

What do you do for wiggly ribs? Like when you can see and feel it wiggling and moving /pulsating off it’s own accord.

Taping ?
Binding? ….

It’s not painful but it’s an odd sensation and I’d like to avoid any unnecessary inflammation.

🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓