Mandi Kingsbury

Nationality: New Zealand
Age: 37
Profession: Fashion stylist and designer
Type of MS: Relapsing remitting
Year of diagnosis: 2003



I was born and educated in New Zealand and after graduating from Wellington design school in 1995 I was recruited to work in a haute couture house in Dubai. With hotter days and longer working hours, I was constantly fatigued. Doctors told me it was due to the change of climate and stress. I started to lose my vision intermittently and for three years before my MS diagnosis I wasn’t confident to drive and took a taxi everywhere.

Things came to a head in 2003 when I was studying towards a Masters Degree in design and working freelance for Arushi, a Dubai couture house, where I designed clothes for royal families across the Middle East. My symptoms got so bad that I couldn’t complete my work. I was quite familiar with fatigue and eye problems at this stage and just wanted to be able to work. The general practitioner sent me to an ophthalmologist who gave me glasses to retrain the muscles in my "lazy" eyes. I only lasted a week with these. I was sent for an MRI scan by a neurologist and given a "probability" of MS diagnosis immediately after. The neurologist’s approach to the whole diagnosis was thorough and tackled the disease with genuine understanding. I chose not to tell any of this to my family until MS had been fully confirmed by a lumbar puncture.

I was glad to be able to put a name to my symptoms. My friend said "it doesn’t sound like you are going to die from it so it can’t be too bad," so I started to look for ways to live with this incurable illness rather than giving in. There was no MS support group in Dubai and I educated myself and my friends from what we learnt on the internet.

After my diagnosis I learnt to accept my MS and kept quiet about it. There is almost this guilt that you don’t want to inflict this knowledge on another person. When I told people I had MS I would see the shock on their face and it stopped me from saying anything.

Now that I’m aware of what’s happening, I take it easy when I get tell-tale signs that I’m working too hard, such as fatigue or numb legs. I work as a freelancer so it doesn’t affect anyone. It is lucky for me that I work in fashion, because if I don’t recognise someone or can’t remember their name I just call them darling, and if I’m stuck in the heat and get grumpy it’s okay because all fashionistas do.



While I am travelling internationally for my career I use my skills and creativity for the MS cause through my ProtestMS campaign and retail label, through which I raise awareness of MS. I call it ProtestMS as it’s something people with MS do everyday – we protest it. We deal with the symptoms on a daily basis, even if we’re not having an attack.

As part of ProtestMS, I design and sell fashionable items to raise funds for MS awareness, workshops and research. I promote ProtestMS workshops for people with and without MS. These focus on simple creative designs to inspire and encourage discussion and support. My ProtestMS broach was modelled in Vogue India magazine in December 2007.

My design career has had many high points, one of them being awarded the Montana World of Wearable Art Supreme Award in 1994. I wanted to win this award again, this time with the added gift of MS. In 2007 I created "Motion and Stillness," a wearable sculpture that embodied the physical restraints caused by MS. It was my hope that my creation would begin a public dialogue to create awareness of the disease and to inspire individuals living with the disease.


"Motion and Stillness"

"Motion and Stillness" was awarded the winner of the American Express Open Section and runner up to the Montana World of Wearable Art Supreme Award 2007. It was featured on the cover of the MS Society of New Zealand’s MS Voice Magazine, November 2007. My story was also featured extensively in national and international media.


Media coverage in Emirates Woman magazine

I am involved with many MS support groups with ProtestMS including New Zealand and Dubai. I am a volunteer with the newly created United Arab Emirates MS Support Group. I am passionate about this beautiful region where people are still very shy about talking about the disease.

I am working on a concept for a live ProtestMS webcast workshop on World MS Day, 27 May 2009. It will provide easy and inspiring creativity for all! It would be fantastic if we can get the thumbs up globally to ProtestMS and celebrate with quirky creativity.

I am currently based between New Zealand and Dubai, juggling commercial design and non profit work for ProtestMS. I have no intention of slowing down or stopping my career. I protest my MS every day and I would like people to do the same in a positive way. You can’t predict what is going to happen with MS and I’d hate it to take away anything from my life. I don’t want to be in the progressive stage and say "I wish I had done that." I don’t want to sound cavalier because MS is a very serious disease. All people handle it in a different way but this is what’s right for me.

ProtestMS information: Headquarters@ProtestMS.com Facebook

United Arab Emirates MS Support Group: multiplesclerosis.uae@gmail.com

New Zealand MS Society

World MS Day