Search

mind, body & EDS

| living with a rare, invisible, genetic disease |

‘Dazzle Together’ for May – Ehlers Danlos Syndromes Awareness Month

May is Ehlers Danlos syndromes awareness month🎗Ehlers Danlos syndromes are unexpected in the medical world because they are rare, mid-diagnosed and under-diagnosed. 

“When you hear hoofbeats, it really is a zebra.” 

The zebra is a symbol of EDS. No two zebras have identical stripes just like no two people with EDS are identical. A group of zebras in the wild are called a dazzle – that’s why every May we all assemble to be stronger and dazzle together to raise awareness ✨ 

Please consider donating to The Ehlers Danlos Society that will go towards funding research to find a cure 🔬 

What are you doing to show your stripes and support? 

Love wearing my beautiful handmade EDS awareness bracelet made by and given to me by one of my dear zebra friends, Christina. Go get one to show your support by visiting her Etsy shop here

#DazzleTogether #DazzleYourCommunity #EhlersDanlosSyndromes #EhlersDanlosAwareness #TheEhlersDanlosSociety #EDS #edsawarenessmonth #ZebraStrong

Why I Smile…

I smile because miracles happen every day. I smile because I have survived yet again. I smile because this neurosurgeon has saved my life and has given me another chance to live and pursue my dreams. I smile because even though this invisible disease is incurable, he has set me free from the struggles and life-threatening complications living with a progressively sick brain. I smile because he has given me the ability to believe in hope again, the strength to never give up, to keep fighting and advocating because it’s always worth it. Even though our disease may be rare, we still matter. Whilst so many other doctors worldwide are not willing to believe this epidemic is real, I am eternally grateful to Dr Liu and his team at UVA who do. Even though there are still so many “I don’t knows”, “what if’s” and “I’ve never seen this before”, they are willing to go above and beyond to provide pioneering treatments to complex EDS patients with unsolved brain problems to better our quality of life. You truly are an extraordinary human being, what I like to call a “hero” 💫🙌🏼🇺🇸

UPDATE: Laura out of surgery #5

Well, she did it! Defeated neurosurgery #5 with flying colours and a highly pressurised spurt of cerebrospinal fluid when the surgeon drilled through her skull! Fingers crossed she starts to feel the benefits tomorrow morning 🤞🏻Thanks so much for everyone’s support during this seemingly never-ending journey with Laura 🌼

Love Rochelle (Laura’s twin sister)

UPDATE: Laura scheduled for 5th brain surgery on Thursday 13th April

It’s hard to believe that a year ago today my incredibly brave twin sister underwent her THIRD major neurosurgery. Unfortunately, we found out yesterday, after a catheter angiogram, that Laura will most probably need to have her FIFTH brain surgery Thursday this week. She requires a brain shunt to help move her cerebrospinal fluid from her brain to her abdomen. The high cerebrospinal fluid pressures are causing her brain to become more sick, threatening to cause further permanent vision loss and brain damage. Today she will be undergoing a spinal tap procedure to see if her symptoms are relieved. We are worried but hopeful that this surgery will give her the relief her brain needs in order for her to get back to some kind of normal life! I know a lot of you have done so much already, but we still desperately need your support and donations in such a short time frame to afford this surgery in America. I appreciate your time in reading my plea to help my twin once again 💗 

Love Rochelle (Laura’s twin sister)

Donate here: https://www.youcaring.com/laura-sylvester-483048

Time to fly! 

“Life is tough my darling, but so are you” ✨On my way to USA for my 5th brain surgery…I admit that I am scared of the journey that lies ahead of me. I fear the unknown and unpredictability of living with a chronic disease with no cure. I have been told on numerous occasions that it is a miracle I am still alive with what has been dealt to me. I believe you either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. This choice does not belong to fate, but instead to you and belief of hope. I am grateful to all patients, charities and few worldwide specialists offering us medical zebras a beacon of hope. Hope isn’t pretending that troubles don’t exist, but instead the hope it won’t last forever. Pioneering patients like myself risk their lives to advance the research of medicine and our diseases to find solutions for a better quality of life whilst contributing to finding a cure one day so future generations can live freely. I am grateful for this journey as it has given me a stronger purpose in life, not just to live, but to make our invisible visible. Thank you for all your love and support, wish me luck! 💜✈️🇺🇸

Gluten-Free Blueberry & Cacao Fluffy Pancakes 

Laura Lee’s Kitchen by Mind, Body & EDS

When it comes to finding a good gluten free American pancake recipe that actually makes fluffy, mouth-watering, soft pancakes, I have searched far and wide and found it near impossible. A lot of recipes that are gluten free require mashed bananas. Unfortunately, due to my Mast Cell Activation Disorder, I am unable to eat bananas due to their high content of histamines. So I have trialled countless recipes that I had so much hope for, but failed terribly creating grainy, crumbly, tasteless pancakes that just don’t do the classic recipe justice.

But, gluten and dairy free eaters you will be relieved to hear that I have finally concocted the perfect balance of ingredients that actually create the closest replica of the classic American pancakes – and believe it or not, they are healthy too so you can selflessly indulge guilt-free! The combination of cinnamon, cacao and bursting warm blueberries is simply delicious! I recommend you trial these out on your non-gluten relatives and friends and see the surprised look on their faces when their taste buds are bursting with flavour!

Continue reading “Gluten-Free Blueberry & Cacao Fluffy Pancakes “

BREAKING NEWS: Laura must return to USA in April 2017 to undergo more investigations & brain surgery

DONATE HERE

SPONSOR & DONATE TOWARDS:

Hospital Fees: £75,000 (+)

Surgeon Fees: £15,000 (+)

Hotel (3 weeks stay): £4000

Return Flights: £3000

Vision Therapy (12 sessions/24 hours): £3000

Physiotherapy (12 sessions/12 hours: £1500

Medications: £1200

Continue reading “BREAKING NEWS: Laura must return to USA in April 2017 to undergo more investigations & brain surgery”

Rare Disease Day, 28th February 2017

#RareDiseaseDay #CareForRare

Health is a crown that the healthy wear, but only the sick can see it.


I, amongst 350 million other people worldwide, are battling every day with rare diseases that are mostly unknown, uninvestigated and incurable. The worst part about living with a rare disease is the unknown. Nothing in your life can be certain because at anytime your life can come crashing down.

Continue reading “Rare Disease Day, 28th February 2017”

Maple Aubergine Salad

Laura Lee’s Kitchen by Mind, Body & EDS

As my diet has developed into a more vegan style, I always like to make sure I use one core vegetable which is packed full of nutrients as my ‘base’. I have personally found that with my variety of complicated dietary issues, I can absorb the nutrients of food far better when there is no meat involved. If I haven’t consumed enough protein, I always reach for quinoa for my meals! However, if you feel like having some meat you can always adapt this recipe to more your style by simply adding some grilled chicken.

Aubergines are a fantastic vegetable as as they very rich in fibre and are a great source of vitamins and minerals (copper, magnesium and manganese).In particular, they are known to be extremely high in vitamin B1 and B6 which play very important roles to your body’s metabolism helping convert food into energy and produce essential substances, such as neurotransmitters (allows nerves to function properly) and red blood cells. They also have a very low glycemic index level (GI) and low calories so are ideal for any of you with high blood pressure and high cholesterol. Continue reading “Maple Aubergine Salad”

Blog at WordPress.com.

Up ↑