It’s important to understand that you are not on your own. The CGD Society can help to support you in a number ways. If you cannot find the answers you need in the FAQs below, please contact us.
Sometimes I feel I can’t cope. Is this normal?
Living with CGD can be stressful at times. It is not uncommon to feel angry, depressed, frustrated and other emotions. There may be an emotional impact on other members of the family too, including siblings. It’s not unusual if this is happening to you or your family. It’s a good idea to talk to someone who can help you adopt strategies that will enable you feel more in control and cope better.
Your GP may be able to put you in touch with someone who can help you. They may refer you to a counsellor or local psychology services.
You may also be able to refer yourself to a counsellor and psychology services too through a service called Improving Access to Psychological Therapies (IAPT).
What support for families does CGD Society provide?
Our website provides a trusted source of information on CGD for families, medical professionals and the wider public both in the UK and around the world.
We offer practical help through:
- Our helpline
- Our CGD specialist nurses who provide help and advice particularly at times of crises and periods of intense hospital treatment
- Provision of pre-payment prescription charge certificates to those affected by CGD who are not already exempt was extended to carriers in 2011
- Assistance for travel costs to attend clinics is also offered to those without the resources to attend clinics that are far from home
- We also provide financial help in times of need to families affected by CGD through a designated Family Fund
I never know when I should be contacting the doctor. I’m worried that the doctor will think I’m making a fuss.
Keeping an eye on things and taking swift action to avoid problems is important in CGD.
You know your child and your own body better than anyone. Seek medical advice if the following symptoms last for more than a couple of days:• you or your child don’t seem like your usual self
• you/they have a temperature
• you/they feel tired
• you/they don’t want to eat
• you/they have tummy upsets
• you/they have vague painsDon’t be afraid to go back for more advice if things don’t improve after a visit to the doctor. Always remember – you know what is usual for your child and yourself.
If you live in the UK, contact the CGD clinical nurse specialists.
Is there any way I can meet other families?
The CGD Society holds UK social events including Get Together weekends for families affected by CGD.
We can put you in touch with other families. Please get in touch with us at 0800 987 8988 or hello@cgdsociety.org
Alternatively, if you are in the UK, contact our CGD clinical nurse specialist.
Can you help us explain the condition to my child’s school?
Good communication with the staff at school is important. It will help you and the staff work together to ensure your child gets the most out of school life.
Get in touch with our nurse who can talk to your school if needed.
What can I do to help my child/myself?
The first step is to seek specialist advice and, if you live in the UK, to contact our CGD clinical nurse specialist. To see a CGD specialist you need to ask your GP or local hospital consultant to refer you to a specialist centre. You will have regular appointments with your local consultant and see a CGD specialist at least once a year. The CGD specialist sees a number of people with CGD, so he/she is well placed to give an overview on your child’s/your treatment.
There are also things that you can do to help reduce the risk of infection and illness. This doesn’t mean that you/your child shouldn’t take part in normal social activities/school/work – often it is a case of adjusting your life style.