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BMT Research

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…

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Talk to Someone

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…

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Gene therapy was last shot

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…

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Fundraising : One Lottery

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…

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Fertility Issues

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…

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Why Me?

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…

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T-cell Depletion in Haematopoietic Stem Cell Transplantation

T-cell Depletion in Haematopoietic Stem Cell Transplantation T-cells, a type of white blood cell, are the cells that cause graft versus host disease (GvHD) after a haematopoietic stem cell transplant (HSCT, also known as bone marrow transplant or BMT). The T-cells are removed when there is a strong possibility that GvHD may occur after an…

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QoL issues in X-linked CGD Carriers

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,…

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Where it all began

Affected Adults If you have just been diagnosed with CGD, welcome to the site.  This is what you need to know: » CGD is an inherited genetic disorder » It isn’t down to anything that you did – it is not your fault or anyone elses.  Genetic conditions just happen and there is nothing you…

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Graft versus Host Disease (GvHD)

Graft versus Host Disease (GvHD) Graft versus host disease (GvHD) is a complication that can arise following a bone marrow or stem cell transplant. GvHD occurs when particular types of white blood cell (T-cells) in the donated bone marrow or stem cells attack your own body cells. This happens because the donated cells (the graft)…

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