High Symptom Burden in Female X-linked CGD Carriers
Executive Director Felicia Morton, along with CGDAA medical advisory board members Dr. Jennifer Leiding, adjunct professor John's Hopkins University and attending physician, Orlando Health Arnold Palmer Hospital for Children and Dr. Harry Malech, National Institutes of Health, Genetic Immunotherapy Section Deputy Chief, Laboratory of Clinical Immunology and Microbiology National Institute of Allergy and Infections Diseases, have authored a first-of-its-kind research study regarding female carriers of X-linked CGD, entitled "The high symptom burden in female X-linked chronic granulomatous disease carriers."
The highlights of the study include:
- XL CGD female carriers are an underrecognized population
- Autoimmune and inflammatory symptoms are the most commonly reported
- An alarmingly high rate of anxiety is reported in XL-CGD female carriers
The study was published in the November 2024 issue of “Clinical Immunology,” the top peer-review medical journal for immunology research.
We are grateful to Amgen for the their support of this initiative.
High symptom burden in female X-linked chronic granulomatous disease carriers - ScienceDirect (pdf)
DownloadWHAT YOU NEED TO KNOW
A GUIDE FOR CARRIERS OF X-LINKED CGD
CGD is an inherited condition and can be passed down in either an X-linked or autosomal recessive pattern. Out of all affected individuals, two-thirds have the X-linked form of the disorder. For X-linked CGD, males are most severely affected and females are considered carriers and have a 50% chance of passing CGD down to any children they have. For autosomal recessive CGD, both parents must be carriers in order to pass CGD down to a child. If both parents are carriers, there is a 25% chance their child will have CGD, a 50%
chance their child will be a carrier, and a 25% chance their child will be healthy.
This guide focuses on carriers of X-linked CGD, who may experience symptoms of the condition.
FEMALE CARRIERS OF X-LINKED CHRONIC GRANULOMATOUS DISEASE
RESOURCE FOR DISCUSSING YOUR CONDITION WITH MEDICAL PROVIDER
In general, carrier females of X-linked Chronic Granulomatous Disease (CGD) appear healthy. However, some women may develop health issues and ailments associated with being an X-linked CGD carrier, and in extreme cases may be considered patients with CGD themselves – given that they too have a compromised ability to fight infection. The purpose of this brief guide is to help CGD carriers and their medical providers become more aware of the possible CGD-related pathology of their health issues and to engage in a proactive dialogue to determine if medical intervention is needed. It is recommended to use this guide in conjunction with “What is CGD Guide For Patients” for more background on the pathology and clinical manifestations of CGD.
More Information for Female Carriers of X-linked CGD
CGD Association of America Supports X-linked CGD Carriers
At the CGD Association of America, we are working to support our X-linked CGD carriers women and girls. The CGDAA has initiatives to support out moms, daughters, and grandmas.
Email us at: info@CGDAA.org to get involved, get empowered, and find out more.
X-Linked CGD Carrier Studies
- X-linked carriers of chronic granulomatous disease: Illness, lyonization, and stability. Read more.
- Clinical manifestations of disease in X-linked carriers of chronic granulomatous disease. Read more.
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