Key points throughout the day:
- Listen carefully to CGD patients
- Avoid making assumptions
- Identify the underlying cause behind symptoms
- Give immediate attention and swift treatment to patients with CGD
An Introduction to Chronic Granulomatous Disorder
Rhian Lant, CGD CNS:
- There is back-up for nursing and medical professionals, available from the CGD Research Trust's clinical nurse specialist, Rhian Lant
- It is important to people affected by CGD that the professionals refer to the condition as 'Chronic Granulomatous Disorder'. Adolescents and adults can find it distressing when they are said to have a 'Disease.'
- Taking a family history can be enlightening with regards to diagnosis.
- Always ask questions about specific things e.g. Bowel movements, as parents may not appreciate the relevance of continuous or sporadic problems such as diarrhea
- The test for CGD is straight forward but it can be difficult to know what to look for, so it is important to use an experienced laboratory.
- Major pathogens are Aspergillus fumigatus, Aspergllus nidulans and Nocardia
- CGD patients can cope with viral infections BUT be aware that there can be secondary infections that need attention, e.g. chicken pox spots can be scratched and become infected with bacteria.
- Practical tips to patients include: avoiding contact with compost and piles of rotting grass cuttings; building work (dry brick dust contains aspergillus); dirty water (no pond swimming)
- Normal immunisations are advisable EXCEPT the BCG vaccination. It is important for unaffected family members to be vaccinated against TB.
- The Flu jab should be the 'inactivated' jab.
- Make sure that there is understanding of the reasons behind precautions e.g. they understand why compost must be avoided (because it harbours aspergillus spores that may be inhaled, not because children may get harmful dirt on their hands)
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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