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Sharing experiences of CGD brings those affected by CGD together, helping us better understand the reality of living with CGD, sharing the highs and lows, and acting as an important reminder that we are not alone in our CGD journey.

Would you like to get involved and share your experience with CGD? If you do, we would love for you to get in contact with us at

Please see our blog template to help you write your story.


Shannon and Wendy's story (March 2024)


How to live with and scold CGD in your late teens! and Helping me to help you – a story of two sisters with a love of STEAM

Thank you to Shannon and Wendy for each sharing their perspective on their family's journey with CGD and bone marrow transplant (BMT)

Read their story here: Shannon and Wendy's story

Bobby's story (January-February 2023)


Blogging our bone marrow transplant (BMT) journey

Thank you to Bonnie for sharing with us her family's story as her son Bobby underwent BMT.

Read their story here: Bobby's story


Caleb's story (June 2023)


Being an X-linked carrier and how a stem cell transplant has opened up the world for us

Thanks to Olivia for sharing with us her family's story about life leading up to a diagnosis of X-linked CGD and a stem cell transplant.

Read their story here: Caleb's story


Noah's story (May 2023)


My experience as a young person with CGD

Thanks to Noah for sharing with us his story of living with CGD as a football-loving teenager.

Read his story here: Noah's story


Carly's story (June 2021)


Being a Carrier of X-Linked CGD

We thank Carly for sharing her X-linked CGD Carrier story. It is important to recognise the health and emotional implications of being a carrier.

Read her story here: Carly's story


Michael's story (Jan 2021)


Reluctant patient becomes advocate for CGD Society

Thanks to Michael for sharing his CGD story with us and for being such a great supportive of our work - click here to hear his story


Rheas story (Nov 2020)


Lockdown lessons from a member of our CGD community

We asked Rhea to share some of her and her families experiences in lockdown, and what they taken from it as a family.

Click on her image or here, for a link to the video

Tuesday's story (July 2020)


The day we first met, performed and written by poet, Tuesday Gayle

Tuesday tells her journey in such a brave, creative and brilliant way - just like the author herself!

We're delighted and humbled to be able to share Tuesday's story, living with gp47 Autosomal Recessive CGD in her own incredible style.

Click on her image or here, for a link to the video

Alex's story (June 2020)


2020 marked a significant anniversary for a thirty-something creative in Sydney Australia – it had been 15 years since he underwent a successful bone marrow transplant.

Read his story here : Alex's story


Aydin's story (April 2020)


If you were to step into his classroom, you wouldn’t be able to tell five year-old Aydin apart from his friends - his cheeky smile, handsome brown eyes and smart haircut for school -  he is the picture of health and energy, though his parents tell a very different story…

Read his story here : Aydin's story

More information

Read more personal stories about BMT.

Read more about BMT in our BMT guide for families

Our website contains a wealth of information to help and support you. If you are not able to find the answer to a specific question, feel free to contact us using the form at the bottom of the page or by emailing or calling us.  We are here to help.