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
CGD Patient Perspectives
Mother of 9 year old with CGD recounted:-
- Son was diagnosed and when they met Dr Goldblatt, after many other doctors, he asked her if she suffered from mouth ulcers and suggested a blood test for CGD.
- The guilt she experienced for passing on CGD to her child
- The value of hypnotism prior to anesthesia in making the experience less traumatic
- That liquid medicines can be difficult for a child to take, particularly when there are many. Tablets, crushed in a pestle and mortar kept for the purpose, and mixed into a spoon of yoghourt, are far easier to take. (Always check with your doctor first on whether this will have any affect on the effectiveness of the medication.)
- Little things, such as a certificate for bravery signed by all the ward staff, mean a great deal to children
- A play specialist who plays with a child in a 'safe place' (without doctors and nurses) can make a hospital stay much more bearable
- The 'upbeat attitude' of the staff, even if a little hard to take at first, is actually a great support and 'rubs off' on the child.
27 year old affected patient said that:-
- He is an example that life can be lived to the full - he has a 2.1 degree and has travelled extensively.
- His problems illustrate the wide variety of CGD type problems - various swollen glands; liver abscess 1999;, aspergillus infection 2000, pneumonia 2002, Crohns-like colitis diagnosed 2006 and perianal abscess 2006
- He has simple rules he would like to see medical staff observe:- washing hands; the use of sterile gloves always; the use of sterile gauze for dressing; administration of pain relief. This was not good when he was a child.
- He would like professionals such as surgeons to appreciate the need for speed in the treatment of someone with CGD.
- Regular check-ups are important.
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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