Paula's Ladder To Life: Urgent Spinal Surgery

Our brave Paula, just 36 years old, is at the stage where her symptoms are so disabling that she needs full-time care. Unfortunately, only specialised spinal surgery in the UK (unavailable in South Africa) can help her. We have six weeks to raise £150 000 (R3 million!). We urgently need your help.

This will come as a shock to many friends. You may have only heard Paula is sick and can’t work/ go out anymore or that she has ME/ CFS (A post-viral illness). This diagnosis never fully explained some of her symptoms and experiences, but recent renewed medical investigations have led to new answers that explain so much more!

A change like no other

If you know Paula, you’ll know she is outgoing, intelligent, dedicated and caring. Before her condition prevented her from leaving the house, she was a fully active participant in all life had to offer.

While she is still the same person inside, on the outside, her life is unrecognisable from what it once was.

Paula has spent the last 9 years living with constant pain and debilitating neurological symptoms that have forced her to stop working, walking, dancing, driving, socialising and doing basic daily activities we all take for granted. For the last 2 years, she’s been housebound and increasingly bedbound. She needs help showering and dressing. She can barely lift a glass of water to her lips.

At just 36 years old, she requires full-time care.

This is Paula’s story

When Paula was 27, she lived a full, active life when her health suddenly deteriorated.

She completed her Masters's at Oxford in African Studies and Land Reform (having been awarded a scholarship to go there). She was enjoying working in South Africa when, within a few weeks, she went from working full time, dancing weekly, an active social life, and involvement in her church, to not being able to walk around a block or go to work.

Dizziness, shortness of breath, unrelenting fatigue, difficulty concentrating, inability to process normal light and sound stimuli, and the pain stopped her from basic tasks. A shower would leave her needing a few hours' rest. Eating was draining. Cooking or grocery shopping was unfeasible. She looked normal, so people wouldn’t understand if she asked for help carrying a shopping bag or paused every few steps walking to her car. She tried to keep going to church services and some social events to keep her spirits up amidst this utterly bewildering experience. She’d find herself acting as normally as she could in these environments - out of habit and not wanting to have to explain her strange behaviour. Breathlessness stopped her from being her ‘chatty self’.

Then she’d ‘crash’ after returning to the house and be confined to her bed for days. Finally, not being able to work, afford rent, or be able to care for herself - she was forced to move back home.

It was an enormous shock!

Extensive medical investigations turned up with no answers. Finally, one physician said she probably had ME /CFS - there was no biomarker, no treatment, and she needed to self-manage the situation by learning a new ‘way of life.

She did everything she could to get better. But things just got worse.

She was effectively forced onto a side bench, watching her peers play the game of life - her career, hobbies, dreams and goals snatched from her.

Nine years later, her daily symptoms still include

● Shortness of breath

● Electric tingly shock-like sensations through her spine, arms and legs with movement

● Dizziness and vertigo

● Nausea

● Extreme sensitivity to light and sound (we have to have the lights dimmed in the house, whisper, not play the radio etc. She has to wear earplugs, a hat and sunglasses constantly, even indoors,)

● Severe neck pain and debilitating headaches

● Difficulty swallowing

● Brain fog

And many more.

The Technical Part- a recent discovery

Paula’s ongoing research led to her discovery that in a small subset of M.E/ CFS patients, their most debilitating symptoms are due to complications from connective tissue laxity between the head and neck – a rare kind of craniocervical instability! (The dynamic/ hypermobile type). As a result, their skulls wobbled slightly on their top neck vertebrae, causing stress and stretch injury to the brainstem when moving.

There are only 7 Neurosurgeons worldwide experienced with the surgical technique needed to address this rare dynamic/ hypermobile type of craniocervical instability as it presents in patients with connective tissue disorders/ hypermobility at the craniocervical junction.

We consulted 4 of these. They all came to the same conclusion based on history, clinical picture, dynamic and weight-bearing imaging, provocative testing etc. They explained that Paula has Hypermobility Spectrum Disorder (a connective tissue disorder similar to hypermobile Ehlers Danlos Syndrome). This means she had a genetic predisposition to hypermobility at certain joints (which explains why she herniated a disc at age 18, developed chronic pain after that and has daily subluxations of shoulders etc.). However, the real problem was the long-term, low-grade inflammation she suffered as part of the initial virus and ME/ CFS (a post-viral illness) in her 20s. This further damaged the connective tissue in her neck over time.

Her ligaments have become too loose to support her head properly. As a result, Paula’s skull is sinking slightly onto her top neck vertebrae, moving around too much and affecting the brainstem and nerves in the area. Because the brainstem connects the brain and the rest of the body, stress on it causes havoc with automatic functions like breathing, heart rate, sound and light processing etc.

Paula needs surgery urgently to stop her deterioration, prevent permanent damage and the certainty of a lifelong bedbound life. Longer term, there is a risk of stopping breathing, seizures/ paralysis, strokes and death.

Patients who've had the surgery have had remarkable results - often going from bed bound to being able to walk and work again! Unable to get this operation in South Africa, Paula has followed the progress of nearly 50 patients whose lives are dramatically improved by the operation.

We try not to think about what will happen if Paula can't get the surgeries. She has no savings, and no way to provide for herself. Her ageing mother is her full-time caregiver, which is becoming increasingly unsustainable.

As her parents, we feel like we are failing Paula - as social workers we have served the poorest sectors of South African society all our lives –but we don’t have the resources needed to support our own daughter into the future without this surgery. We never expected a nightmare like this.

Please help us access this chance for life and a future for Paula.

We can't do this alone and will appreciate anything you can give! Even small donations will be significant to us!

We also have to reach as many people as possible - please help us by

sharing with others who can donate or run a fundraising event. Please do share with any sports groups or religious communities you may be part of, and share on your social channels/ email/ WhatsApp friends and family, colleagues etc.

Thank you from the bottom of our hearts!

Paula’s family - Pam (mom), Alan (dad) & Kirsty (sister) and close friends

P.S If you want to help but aren’t sure how?

Look at the Resources at this link below:

• Donation and Fundraising ideas

• Campaign videos, a letter from my mother’s perspective aimed at parents

• shorthand WhatsApp and Facebook messages for sharing

https://drive.google.com/drive/folders/1eN4YyaB6z5Cjcr8XZM_ioSWU7hHQW0-3?usp=sharing

P.S Anyone who wants to donate who wants more information/ has questions, contact email paulas ladder to life at g mail dot com (one word, no capitals, no apostrophe on Paula's. We have to list the email like this to prevent it being automatically removed)