Weaver’s syndrome – The world’s tallest woman (25) speaks out

Already in 2014, Rumeysa Gelgi (25) took her first Guinness World Record.

She was then 17 years old, and became the tallest teenager in the world with her 213.59 centimeters on the plinth.

This is written by the news agency Jam Press.

Rare condition

Rumeysa was born in Turkey, but now lives in the USA. She was born with a rare genetic condition called Weaver’s syndrome, which according to Frambu competence center for rare diagnoses characterized by skeletal changes and delayed development.

– It is considered an overgrowth condition as bones in people with Weaver’s syndrome grow and develop faster than usual both before and after birth. The final height is average or somewhat higher, they write.

Unusually large baby

Rumeysa was already diagnosed as a baby, as she was unusually large for a newborn child. She is the 27th person in history to be diagnosed with the syndrome, the Guinness Book of Records writes on theirs websites.

No other members of Rumeysa’s family have shown signs of having Weaver’s syndrome. Although her childhood was marked by operations, physiotherapy and medical complications, her family has stood by her through it all, the record book states.

When it comes to Rumeysa’s height, she has ended up well above average. In October 2021, she was measured again, and this time she secured another record: the world’s tallest living woman.

According to the Guinness Book of Records, she then measured a whopping 215.16 centimeters.

– Fantastic and terrible

Now she reveals what it’s like to live at altitude.

– Being so tall has both wonderful and terrible aspects. It can give you more world records, but tie you to the wheelchair at the same time, she says, according to the Jam Press news agency.

Brothers burned alive

Rumeysa, who is a trained web developer, describes herself as a person who focuses on the positive and makes the best of it.

– It makes me insanely unique and I love it. Also, being so tall is cool when I’m at a concert or the movies!

However, she has had problems with her health as a result of her height:

– I have had to go through serious operations and treatments to fix these health problems. I use a wheelchair most of the time, and I can only walk with a walker. I was also bullied when I was younger, because Weaver’s Syndrome makes me different.

Characteristic appearance

According to the Frambu Competence Center for Rare Diseases, people with Weaver’s syndrome often have a large head, a flat back, a broad forehead and an increased distance between the eyes.

In addition, they often have large and low-set ears, a long and deep cleft between the nose and upper lip, a cleft chin and a small lower jaw. They may also have a mild degree of developmental disability, reduced coordination and balance.

Headache was brain tumor

Rumeysa tries to use her height as best she can:

– Even though I’m sitting, I’m still taller than most people. That means I can reach higher up and help them.

– Thankful

However, the height causes problems in finding clothes that fit.

– I usually shop for clothes from plus-size brands, and wear dresses as tops. All my trousers and leggings are specially made by a tailor. I can find clothes, but it’s not as easy as for others. Design, style and color options are often limited.

Despite the challenges, the 25-year-old has a support system around him.

– My family and friends motivate me and help me achieve my goals. I can thank my parents for my positive attitude, they taught me early on to have an optimistic outlook on life. I am so grateful to have them in my life, she says.

– Unpleasant reactions

Rumeysa can tell that the vast majority of people she meets are kind and pleasant.

– I have experienced unpleasant reactions, especially when I was smaller. But after I got my first world record, people started showing appreciation and cheering me on.

Died after teaspoon mistake

Now the 25-year-old is using the world record title for what it’s worth.

– Since I got the world record, I have used the attention I have received to raise awareness about Weaver’s syndrome, scoliosis and similar conditions. Now I hope to be able to inspire others who look different, and make them realize that they are not alone on their journey.