Meet Didi Okoh, Birmingham student who’s blown up on TikTok for having rare medical condition

‘Helping others with similar conditions makes me happy’

Didi Okoh is a second year student at the University of Birmingham studying law and criminology.

Didi suffers from a rare medical condition called lymphedema, which only affects around one in every 6,000 people.

Didi has a TikTok account (@didilonglegss) that has gained a fair amount of traction and she now has 22.9 thousand followers. The reason for Didi’s account gaining so much attention is due to the fact she made the decision to spread awareness about her condition, and whilst spreading awareness she is also educating people on the affects of the condition. In her bio she call herself “the girl with the bigger leg”

Due to her lymphedema, Didi has one leg that is almost double the size of her other leg due to excess fluid collecting in tissues and causes swelling.

The Birmingham Tab spoke to Didi and asked her some questions about how her time at UoB has been in regards to her lymphedema.

Didi told The Birmingham Tab that having lymphedema has affected her university experience since the start during freshers week. It is well known that during Freshers’ Week the majority of people going out most nights, which is draining for a lot of people let alone someone who has a medical condition. Didi said how “it’s been challenging keeping up with every other student” as she felt she had “to keep up with what activities everyone else was doing” so she didn’t come across as “boring”. This meant that Didi didn’t give herself enough time to rest, “which is pertinent for [her] health”. Trying to keep up with everyone in freshers week and the following month of first year led to Didi’s leg deteriorating.

Didi told The Birmingham Tab how later on in first year she “realised that [she] needed to focus on her health”. So now that she is in second year she has developed habits that help with her lymphedema, such as going on solo walks and focusing on the improvement of her leg so that she is able to create a uni lifestyle with a better balance.

The Tab Birmingham asked Didi is she believes that the University of Birmingham does enough to accommodate her as a disabled student and she told us how she thinks they do a great job and that she has access to disability schemes.

Didi told The Birmingham Tab how when she started university she didn’t want her leg and her condition to be “a topic of conversation” and only told a select few people about her condition, but this was “just in case [her] health was to rapidly deteriorate” so she would have people who understand.

Didi told The Birmingham Tab how she “never really had any negative comments said to [her] when starting uni [regarding her leg]”. However, she said she does “receive judgmental stares, or people commenting or asking [her] what’s wrong” when she wears her compression garments in public, but Didi says that once she answers the topic of conversation normally moves on.

Didi said that during her past year and a bit at uni she has “been treated like any other person, which is a really refreshing experience compared to being back [at her home town]”.

Didi is passionate about athletics so this obviously means she is part of the UoB athletics club. Didi told The Birmingham Tab how the athletics club have “treated [her] like any other student” and that she hasn’t felt “isolated” within the club. To Didi this is a “huge relief”. Didi told The Birmingham Tab how the club understand she may have “to do less” when she is not “feeling 100 per cent” but they “still expect [her] to do as much as [she] can”.

Didi told The Birmingham Tab the reason why she started to spread awareness of her rare medical condition in 2019 is because she “had enough of feeling insecure and hiding a big part of [her] life”. Didi told how she used to get a lot of nasty comments about her legs during in school and it made her “realise that [she was] letting peoples words affect how [she] lives [her] life”, this made her want to be “stronger in [herself]”.

Didi also said how she didn’t want other people with other conditions to be “made to feel, how [she] had been made to feel, [she] wanted people to know they’re not alone”.

Didi told The Birmingham Tab how when she first started spreading awareness she only thought she would reach a small platform of people, but after one viral video she realised how big her audience for education could become. Didi said how she has enjoyed the platform to be able to “use and develop [her] knowledge to help others”.

Didi told The Birmingham Tab “knowing that [she’s] helping others with similar condition make [her] happy”.

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