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Supporting families affected by DiGeorge syndrome, VCFS and 22q11.2 deletion

Max Appeal is run by parents for parents, carers, their families and anyone affected by the syndrome. Our events (see Family Support Section for details and news of our events planned for 2010) are designed to make life enjoyable and our information aims to inform and help.

Joining Max Appeal is FREE - click the "Contact Us" link to find out how.

!!!!! INTERNATIONAL CONFERENCE
RICOH ARENA 29th ~ 31st July 2010
SEE EVENTS PAGE!!!!
"Early bird" booking rates extended until 15th June - don't miss out!
go to: www.22qdeletion.com to book on line


There is information (click on "Information" on the left hand menu bar) on some of the areas that may affect your child and be used as a guide to assist you with areas to monitor, it has been written by parents,based on personal experience and research and endorsed by professionals but it is not totally comprehensive, we are working continuously to expand the body of knowledge.

Take your time to browse our site, we hope you will find answers to your questions written in plain English!

For our "Introdcution for Parents" leaflet please go to "FIRST TIME ON OUR SITE?"

If you would like more detailed information or would like to talk through any of the specific areas affecting your child please do not hesitate to contact us on our FREEPHONE number, by email or post just write "Freepost Max Appeal" on the envelope, no stamp needed

- just remember we are here to help and support you.

This is a booklet describing, in her own words, how Bryony has coped with 22q11 followed my some sections written by her family and Julia Cadogan,Lead Consultant Clinical Psychologist, South West Cleft Unit, Frenchay Hospital.

We think that lots of young people will find this useful... let us know what YOU think!
More information from:
contact-us.asp


Presented By Lindsey Stedman at the Max Appeal conference on Saturday 18th April 2009.Contact us directly for further information and a copy.

Watch our promotional video on YouTube to see what we're about (opens in new window).
More information from:
http://www.youtube.com/watch


Advice is being updated all the time about Swine Flu.
Dr Andy Genery has prepared this guidance document as at 8th July, 2009.

Swine Flu Guidance

At present, the new H1N1v influenza A virus, (so called Swine ‘flu’) is very infectious, but the majority of infections are not severe, although some affected people have required admission to hospital, and a few with other health problems have died. Most patients with 22q11 deletion or DiGeorge syndrome have normal immunity or mildly impaired immunity and can usually deal with naturally occurring viral infections (like influenza). Some of these patients may have other heart or lung problems, although for the majority of patients these will not be severe. Therefore, most patients will be at low to moderate risk of significant complications if they become infected with H1N1v virus.

At the beginning of July 2009, the Chief Medical Officer, Sir Liam Donaldson, sent round information to health practitioners regarding the diagnosis and treatment of infection caused by the new H1N1v influenza A virus. Current recommendations are that doctors should make the diagnosis of H1N1v infection on clinical criteria, and there is no need for routine swabbing.

Priority early treatment with antivirals (Oseltamivir, also known as Tamiflu) should be offered to people in high risk groups including those with underlying heart or lung disease or those who are immunosuppressed. This will include many patients with 22q11 deletion or DiGeorge syndrome. These patients should also be offered prophylactic antiviral treatment if they have been in contact with a person who has been diagnosed with influenza infection.


New information and advice is likely to become available over the coming weeks and months.

Useful links:

Department of Health – Swine Flu
http://www.dh.gov.uk/en/Publichealth/Flu/Swineflu/index.htm

Dr AR Gennery
Senior Lecturer/Honorary Consultant in Paediatric Immunology
Newcastle General Hospital
Newcastle upon Tyne

8th July 2009



Talk to us and other parents about your child, your concerns, and anything else you want really. Register first (with Yahoo! before posting your comments).
More information from:
http://health.groups.yahoo.com/group/maxappeal/join


Max Appeal welcomes new members and if you would like to become a trustee then contact us!

We will send you information on the responsibilities of charity trustees and what meetings you would need to attend.
More information from:
contact-us.asp

News...

Tiny Tickers have finalised thier "Best Practice" recommendations for the Antenatal Screening, Diagnosis & Audit of CHD - please find attached. Click here for the attached file | Download Adobe Acrobat

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