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Carly’s story (June 2021) Being a Carrier of X-Linked CGD It’s a harsh fate, having to live with a rare, genetic and life-limiting blood disease such as CGD – most of our readers will know only too well the pain and anguish it can bring to the lives of those who live with the condition.…

Organising BMT in the UK from Abroad There are two hospitals in the UK that are designated centres of excellence and offer bone marrow transplantation for CGD. To refer a member of your family to one of these centres, you need to contact them and submit a referral request. They will need the name of…

Regular Appointments When you have CGD it is a good idea to have regular appointments with your consultant – in most cases, an immunologist. They will keep an eye on your general health and make sure any problems, such as the level of drugs you are on, or side effects, are picked up early. Having…

Gene therapy was ‘last shot’ Brenden Whittaker didn’t agree to gene therapy lightly. But he had been so sick for so long that the risk of the first-time-ever procedure would be worth it if that meant finally getting well. Read Brenden’s story   More information See more about Gene therapy Read more about long term…

One Lottery : buy tickets and support our cause! Who is One Lottery?   One Lottery has been established to help good causes throughout the UK to set up a fundraising lottery. Their mission is to help small charities like ours raise funds online, all year round without any fees or admin. One Lottery is managed by…

BMT Research Study shows improved quality of life following stem cell transplantation Children with CGD experience a quality of life similar to that of healthy young people following a stem cell procedure such as a bone marrow transplant (BMT), according to a recent study. It compares the quality of life and emotional well being of children…

Talk to Someone As a young person living with CGD, you will have a host of people who work hard to help keep you healthy and well on a daily basis, from doctors and nurses through to family and friends.  And if you ever have any questions about your health, you are probably told to…

Fertility Issues The chemotherapy used for BMT can cause temporary or permanent infertility. Infertility is the inability to have children. This is an important consideration for parents who are considering a BMT for their child and for those making the decision for themselves. In general the doctors and nurses involved in your care will discuss…

Why Me? ‘Why is this happening to me?’ ‘How is CGD going to affect my life?’ ‘What can I do to make myself feel better?’ These are all common questions children and young people ask when they find out they have CGD. We offer some answers below. How CGD can make you feel Tired. CGD…

Quality of life issues in X-linked CGD carriers Results of the first study into the quality of life of X-linked CGD carriers (XL-carriers) have been published in the Journal of Clinical Immunology. The results show that high levels of anxiety and significantly reduced quality of life are associated with this carrier status. Professor Andrew Gennery,…