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Are you rare aware? | Rare Diseases

Rare Diseases South Africa is helping raise awareness of rare diseases such as sickle cell anaemia — a rare condition Nabeelah was diagnosed with when she was only seven.

World Rare Disease Day takes place on 28 February 2022 and Rare Diseases SA is asking everyone to #ShareYourRare and be part of #RarenessAwareness in its latest campaign.

Shining a light on rare diseases, Rare Diseases SA is encouraging people like Suraiya Casoo (mom to Nabeelah who has rare sickle cell anaemia) to speak up and share their rare. Sickle Cell Anaemia is a rare, genetic blood disorder which causes the red blood cells to be a sickle shape. These blood cells die earlier leaving a shortage of healthy blood cells, they block blood flow causing immense pain and causes patients to be chronically low in oxygen.

‘Hello, I am Suraiya Casoo. I am a Rare Woman chosen by the Lord to be Nabeelah’s mom. At age 7, Nabeelah was diagnosed with Sickle Cell Anaemia. I am a teacher by profession, and in my classroom I always loved the boy kids more. I wanted only sons in my family, but how wrong was I! This baby girl today is my pillar of strength. She is the wick of our family candle; she burns bright, spreads light and casts beautiful shadows in the darkest spaces.

From an early age Nabeelah displayed unusual intelligence and emotional strength. She accomplished all her milestones before expected. Nabeelah wrote her first matric exam paper after being discharged only the night before (from a week spent in hospital). This was against our will, as she told us, “I have to try, I’m not going back next year.” With the same determination, willpower, perseverance and hard work, she completed her BSc and Honours degrees top of the class.

Throughout this journey she’s experienced severe seizures, regular nose bleeds, body pains and several hospital admissions. She cried bitterly at the end of most days, fatigued and broken, swearing that she’s not going back. BUT every new day she woke up to face the same challenges, hopeful for a better day. NABEELAH IS RARE STRENGTH, RARELY GIVES UP, RARELY FAILS.

To cope with it, your lifestyle must be tailored around it, medication, diet, exercise in moderation and often leaning on your support system.

Rare diseases South Africa (RDSA) provides me with a safe space to be completely vulnerable. I’m able to find comfort and advice in people who understand, enabling me to face each day empowered.’

 

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