HI is a rare endocrine condition affecting approximately 1:35000 babies in the UK alone.

The majority of children with HI are diagnosed at or very soon after birth. Other children are diagnosed within their first year when the HI doesn’t not seem as aggressive.

In HI the body’s pancreas produces too much of the hormone insulin.  As insulin is the main hormone controlling the blood sugar level these babies are liable to very low levels.  Since the brain is constantly dependent on a normal blood sugar level this increases the risk of brain damage if the levels are not managed properly.

This can sometimes be controlled by medication or is unresponsive to that then surgery is likely where a pancreatectomy is performed removing part or all of the pancreas.

The aftercare management of HI is complicated whether medically controlled or post pancreatectomy.

If you would like to speak to other parents for helpful hints, just to chat or anything else contract the UK Support Group:

Julia Killengray: 01376 528569

Adrienne Burton: 020 8249 3887

There is an international email group with it’s own website designed by parents of HI children.  Medical experts of HI have also written articles for this website.

www.sur1.org

To join the email group just visit the above website and follow on screen instructions.  Members come from all over the world including, UK, USA, Canada, Australia and other European countries.

Quote from a parent:

“The email group is my lifesaver.  I share my experiences and listen to others.  I have learned a lot and been helped a great deal by others who have been there and done it! I now get enormous satisfaction helping new members through their hard times as I have now been there and done it myself”

In 2003, a doctor, nurse and two mothers established The Children’s Hyperinsulinism Fund – a charity to help children who suffer from this condition.

The fund will be used for desperately needed research into all aspects of HI from medication, cause including genetics, feeding issues, digestive enzymes and their control, diagnosis and protocol along with many other areas.

All members of the UK Support Group have an input as to what type of research is undertaken.

Monies from the fund will also be used for any equipment necessary for research and patient care.

The charity would like to raise approximately £100, 000 each year to cover these costs.  You will find further details on our website of what the charity s hoping to achieve in the future.

All details can be found on our website:

www.hi-fund.org

For further information email us on:

info@hi-fund.org

Or call us on:

Julia Killengray: 01376 528569

Adrienne Burton: 020 8249 3887

Clare Gilbert: 020 7405 9200 (ext) 0360

Any donations greatly received.

Please send donations to:

Clare Gilbert

c/o Great Ormond Street Hospital

Endocrine Office

Level 4, Cardiac Wing

Hospital for Sick Children & NHS Trust

Great Ormond Street

London

WC1N 3JH

Cheques made payable to:

Hyperinsulinism Fund ref. SH16