Living with Sickle Cell Anaemia: A Journey of Resilience and Self-Discovery

Disabled and Proud

Brooke is joined by special guest, Saadiya Yusuf, who shares her experience of living with sickle cell anaemia, a genetic blood disorder. Saadiya explains the challenges of describing the condition to others and the importance of maintaining medical autonomy, as well as discussing its impact on red blood cells, oxygen levels, and the occurrence of painful episodes known as sickle cell crisis.

Saadiya also addresses the issue of fatigue and the impact of sickle cell on childhood and teenage years, reflecting on the process of understanding and accepting her condition, as well as the resilience she has developed.

KEY TAKEAWAYS

• Sickle cell anaemia is a genetic blood disorder that affects the shape and function of red blood cells.
• People with sickle cell anaemia experience severe bouts of pain called sickle cell crisis, which can last from a day to a month.
• Sickle cell trait is when a person carries one copy of the sickle cell gene but does not have any symptoms.
• Resilience is a key trait for individuals with sickle cell anaemia, as they often have to navigate challenges and manage their condition.
• It is important to prioritise self-care and not feel guilty about taking time for rest and managing one's health.

BEST MOMENTS

"I think there is a misconception I think with doctors and kind of like going to the hospital that it's just a black disease or just like a black condition and I understand where that comes from but I think it can be quite dangerous to kind of categorise a condition that way because medical racism plays a part in everything."

"I definitely say to kind of or thinking about entering the corporate world to look for companies and organisations that really value inclusion and have kind of like processes in place to help people to help their staff with disabilities."

"I think it's definitely a journey, especially if you've had a disability all your life, but society and the way society is set up will make you feel like you shouldn't be proud of it."

"I understand the desperation of wanting like, oh, there must be something, you know. And I think a lot of those so-called doctors kind of pray on that desperation."

VALUABLE RESOURCES

https://podcasts.apple.com/gb/podcast/disabled-and-proud/id1621152878

HOST BIO

Disabled and Proud is the show that brings listeners a different perspective on disability. Each week this podcast highlights an awesome disabled guest speaking about their own disability; why they are proud to be disabled and why they are proud to be themselves.

The conversations in this show will look at what challenges these amazing people face socially, mentally, physically and life in general. This show is raw, open, honest, funny, welcoming and educational.

Disabled & Proud does exactly what it says on the tin! And whilst we are creating this space for disabled people to be unashamedly themselves, without the need to conform to society, this is also not about toxic positivity. This show will be shining a big, bright light on disability without it being “Paralympic or pity”.

As you will hear disability is WHOLE, COMPLETE & PERFECT and whilst the topic of disability can be quite heavy - and we definitely don't shy away from the bad days - this podcast is also about having fun too! Our aim is to play a part in reclaiming the word disability - turning it from inadequacy to perfection!

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