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Jun 19, 2020, 7 tweets

To celebrate #WorldSickleCellDay, we'll be sharing a series of short videos created by our paediatric haematology and red cell team. 📹

In our first video, patients Mapaolo, Elle and Jennifer explain what it's like living with the condition 👇

@SickleCellUK | #ShareSickle

"I have been taking hydroxyurea since the age of ten and I have recently started the red cell exchange."

Everyone's treatment journey is different and individual to them - hear from some of our patients about their experiences. #SickleCellAwareness #WorldSickleCellDay

"Having a good support system really does help me feel less alone"

In addition to treatment, some of our patients say talking and sharing their experiences with others helps them to cope with their condition. #SickleCellAwareness #WorldSickleCellDay

"We had little knowledge of the disease at the time and we didn't understand a lot"

The parents of two of our young patients have shared how they felt when their child was diagnosed with sickle cell disease. #SickleCellAwareness #WorldSickleCellDay

"It has bounded us together as a family"

Staying connected with friends and loved ones has never been more important, particularly for those who are shielding. For Fiddours and her family, the time at home has brought them closer together. 💙 #SickleCellAwareness

We’ve been so inspired by the stories of our patients. 💙

Living with #SickleCellDisease can be challenging and unpredictable - and in our final two films we hear about some of the steps they take to manage their condition.

“I requested one of those blue badges...and it does help to make my need more visible.”

For Elle, living with #SickleCellDisease impacts on so much, but by making some small changes she’s found ways of managing her pain.

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