Jeune Syndrome Foundation

“Make Jeune’s Known”

About the Jeune Syndrome Foundation

About the Foundation

The Jeune Syndrome Foundation has been set up by a Jeunes family for Jeunes families.

On this site you will find current information on what Jeune Syndrome is, why it occurs and common symptoms.

You will also find a page of biographies written by people who have experienced or live with Jeune Syndrome.

Did you know the Jeune Syndrome Foundation has leaflets telling you all you need to know about Jeune’s?

You can download a copy HERE.

Our Community

The Jeune Syndrome Foundation Facebook Page is a great place to come and chat and we would welcome any suggestions you might have to make this support group effective in supporting you and your family through your Jeunes journey. You can talk to other people living with Jeunes from all over the world who will be only too happy to share their experience and advice with you.

If you have any ideas or suggestions on how to improve the group or website. Please get in touch with the details below.

“Lets Make Jeunes Known”

From our Facebook page.

We just wanted to give a shout out to all our Jeune people who experience sight loss, on this years World Sight Day

Certain types of Jeune Syndrome do develop sight problems, namely retinitis pigmentosa

If you need information about Jeune Syndrome and sight loss then please get in touch!
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Here is a message from our founder and chair Valerie Kiln-Barfoot -

Hello you lovely people, I hope you are all still making mischief and in general being gigantic nuisances. As you all know I have begrudgingly lived alongside my disability Jeune Syndrome for 28 long years. But that the last three have been the most difficult we've had to face. So many anaphylaxis, infections, septic shocks, medically induced comas, tunnelled lines, midlines, power wands, central lines, femoral lines, artificial feeding, restrictions to 15 foods, 4 stone of steroid weight, sooooo many operations.... and the list goes on

And through it all you've all been amazing with your wonderful words of encouragement. But during the last few weeks me, my family and my medical team have been evaluating whether these aggressive treatments, which keep me in hospital for 7mnths a year, make me vomit, lost my the sight in my right eye, ruined my kidneys, is what I want for my quality of life. Coupled with the fact that 95% of treatments I've now become immune too anyway. And in short my friends it's not. I won't go into the nitty gritty but in short this hospital stay will be my last. I intend to go home and go to marwell zoo with Royston Hall, see Good Charlotte with Vicki Dowse, spend time on felpham beach with Nigel Kiln-Barfootand make a family quilt with Linda Kiln-Barfoot.

I do so dearly hope all of you will understand and respect this decision. The decision can be reorganised or remodelled at any time but at the moment this is what I want. The Foundation will continue through the trustful hands of our wonderful trustees and I can only hope that I have made at least a small difference in making Jeunes known. Much love xxx
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