CGD Carriers and Lupus-like symptoms
Chronic Granulomatous Disorder (CGD) is a genetic disorder affecting the immune system.
CGD carriers are unlikely to have the condition but are known to be at risk from developing lupus-like symptoms.
It is recommended that CGD carriers presenting with aphthous ulceration, skin rashes, joint pains, fatigue and headaches are considered for referral to a rheumatologist and/or other relevant specialists for treatment of ‘lupus-like symptoms’ regardless of the results of a test for lupus. In CGD carriers, lupus test results are likely to be negative as supported by the following evidence, but symptoms need to be taken seriously.
Evidence includes:-
• A study undertaken at Great Ormond Street Children’s Hospital, published
'Cutaneous and other lupus-like symptoms in carriers of X-linked CGD chronic granulomatous disease; incidence and autoimmune serology’ Clin Exp Immunol. 2007 Apr; 148(1):79-84 Cale CM, Morton L, Goldblatt D.
This concluded that symptoms of photosensitive and other skin rashes, joint pains, fatigue and aphthous ulceration are common in carriers of X-CGD. If significant, consideration should be given to referral to a rheumatologist or dermatologist and appropriate treatment initiated. Negative autoimmune serology is probable, and should not influence diagnosis and treatment.
• An informal study undertaken by the CGD Research Trust into the symptoms experienced by carriers.
Of 35 included in the study, 85% have mouth ulcers; 88% are affected by skin problems; 68% have fatigue and 45% have recurrent headaches. Some have a combination of symptoms. It appears there is a tendency for the symptoms to increase with age. In some cases the symptoms are severe and debilitating.
To see more on this website please see:
Carrier issues and lupus: the link - published papers on this subject
Carrier issues and lupus: 'Q' and 'A' with Dr Cathy Cale
CGD Nurse Study Day: Carrier Issues
You can also put 'lupus' into the search box
If you would like more information, please contact
CGD Clinical Nurse Specialists:-
Marie Kirwan: 075 460 79025 marie.kirwan@manchester.ac.uk
Helen Braggins: 020 7405 9200 Ext. 5024 BraggH@gosh.nhs.uk
Claire Bonner (GP with special interest in CGD/ lupus) Mobile: 07796 133 300
CGD Research Trust: 01725 517 977 cgd@cgdrt.co.uk
If you would like an information sheet to scan in to the notes of your patient, please contact the CGD Research Trust.
Alternatively, you could put a link to the page in the summary of the notes.
IMPORTANT NOTE :
The information contained on this website is intended only as a guideline, not as a substitute for medical advice. Always consult your doctor if you or your child has any CGD symptoms or concerns.
© 2001-2007 The Chronic Granulomatous Disorder (CGD) Research Trust
Registered Charity No. 1003425 email:cgd@cgdrt.co.uk
The CGD Research Trust is a member of the Association of Medical Research Charities (AMRC), the Genetic Interest Group (GiG) and an associate member of the International Patient Organisation of Primary Immunodeficiencies (IPOPI)
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