mind, body & EDS

| living with a rare, invisible, genetic disease |


April 2017

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” ๐Ÿ’ซ๐Ÿ™Œ๐Ÿผ๐Ÿ‡บ๐Ÿ‡ธ

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 ๐Ÿคž๐ŸปThanks so much for everyone’s support during this seemingly never-ending journey with Laura ๐ŸŒผ

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 ๐Ÿ’— 

Love Rochelle (Laura’s twin sister)

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Time to fly!ย 

“Life is tough my darling, but so are you” โœจOn 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! ๐Ÿ’œโœˆ๏ธ๐Ÿ‡บ๐Ÿ‡ธ

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