Guinness World Record holder Rumeysa talks with the Child Growth Foundation about her work to raise awareness of overgrowth condition Weaver Syndrome
How many Guinness World Records do you currently hold, and what are they?
Currently I hold 4 Guinness World Records titles: the tallest living woman, the largest hands (female), the longest fingers (female) and the longest back (female). I’m also the former holder of the tallest living female teenager title.
Do you remember how old you were when you first understood you had Weaver Syndrome, and how you felt at the time?
I was around 5 or 6 I think. I have never felt bad or upset about it because my parents taught me that Weaver Syndrome (WS) is what makes me unique. I was amazed when I found out that I am the 27th person diagnosed in the entire world, and even I myself started researching to learn more at such a young age.
Given that Weaver Syndrome is so rare, do you feel an obligation to be a spokesperson for the condition? If so, do you see that as a burden or a benefit?
I didn’t feel that I’m obligated to, but I really wanted to do this. I always knew WS is quite rare and there are just a few people with it in the world. So I wanted to inform others and spread awareness. I’ve been voluntarily advocating for WS since I received my first ever Guinness World Records title 9 years ago and this gives me honour!
What sort of physical support and equipment do you rely on in everyday life?
I get around in a wheelchair most of the time and can walk with a walker for short distances.
You must get asked the same questions over and over again – what question are you most sick of answering?
As you know, one of the most common features of WS is a deep voice. Obviously I have that, too! However, many people can’t figure out the reason and often ask me ‘What’s wrong?’ with my voice!
In what ways did having Weaver Syndrome affect your teenage years?
In order to stop my overgrowth, I received a medical treatment from age 6 to age 9. The purpose of this treatment was to start my puberty via giving a high dose of oestrogen into my body and then end it after enough time. So I was going to be able to reach my adult height as soon as possible and it would be the minimum. So, even though it sounds a little crazy, my puberty process started when I was 6 and ended when I was 9.
So as a result of this, in my teenage years, I already had an adult woman’s body. I know this could be traumatic for a child at that age but my parents, who also have a medical background, did a great job of explaining the whole treatment and situation to me. So I never remember that I felt scared with what was happening.
What sort of impact has it had on your professional life?
I’m a web developer. I chose this profession not only because I have always been interested in computers and technology, but also as I thought that having a career in tech/programming would be the most suitable one for me since I have physical disability due to WS. I really wanted to follow a career path that I will be able to perform as a job and these type of fields have a lot of remote work opportunities, so I thought it would be a huge advantage.
Your long-haul flight to the US in 2022 required adjustments on the part of the airline to enable you to travel comfortably. Can you describe the experience of researching travel options and explaining your needs to the airline? Were they understanding?
I was born with scoliosis which is another feature of WS. Even though I was operated for that when I was 17 years old, I still have some curvature and carry 2 rods and 30 screws in my spine. That’s way I can’t sit longer than 2-3 hours at once and then I need to lie down and take a rest. So my only option to be able to travel from Turkey to California was flying on a stretcher.
Traveling on a stretcher is not a process that can be easily arranged. Usually it is used for passengers in a medical emergency situation. As far as I know this was the first time ever that this option was used for a tourist passenger.
So the entire process required a lot of research and preparations. I contacted Turkish Airlines, as it is one of the very few airlines that provide a stretcher option. In order to make this journey happen, they had to close six seats in the economy class of the plane and place a stretcher on them.
At some point in our discussion, this turned into a PR trip with Turkish Airlines. Everyone working there was super kind and helpful, and put my safety and comfort first.
How are you enjoying life in California? And what is your everyday working life like?
I’m definitely living my best life here. California, especially compared to where I live in Turkey, is way more accessible which is a huge benefit for me. I have been exploring Bay Area for the last 6 months, and recently spent a week in Los Angeles which was an experience I enjoyed a lot!
You have obviously faced a lot of obstacles and adversity in your life, how do you manage to stay positive?
I always had dreams and goals, and I knew that I can achieve them with hard work and dedication. Thanks to my family’s endless support, I have never let negative thoughts hold me back. Plus, being a 5 times Guinness World Records holder and a public figure are what keeps me motivated and going.
What advice would you give a young person coming to terms with living with Weaver Syndrome, or another overgrowth condition, such as Sotos Syndrome?
Your syndrome doesn’t define who you are as well as your talents. Always be aware of your potential, set goals for your future and do your best to achieve them.
What ambitions do you have for the future?
I have so many things planned to achieve in the future. In general I can say that I’m building a future for myself where I can live my life as independently as possible in the place I dream to live.
Is there anything else you’d like to share with members of the CGF?
Thank you for having me. It’s a privilege to share my story with you. I hope my story could inspire you and your children in one way or another. Keep fighting, being rare is precious!
Huge thanks to Rumeysa for taking part in our Q&A, and for helping to raise awareness of Weaver Syndrome.
To find out more about Weaver Syndrome and to access our support and information here on our website or contact our support line on 020 8995 0257 or at firstname.lastname@example.org.
You can follow Rumeysa on her Instagram @rumeysagelgi.