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.

This is a post to say thank you for bearing with the foundation at this turbulent time. As many of you aware the foundation is run by a small family unit and primarily by Valerie Kiln-Barfoot. Unfortunately Valerie has been extremely ill with sepsis resulting in being placed in a medically induced coma for several days. As such activity by the foundation has been limited. However things are slowly getting back up and running and normal service has been resumed.

This means that we are back supporting you through your Jeunes journey with advice and support day or night and excitingly preparing our family conference in October

We would once again like to thank everyone for there amazing support and well wishes at this time. We all know that this Jeunes journey is a rough road, but thank you for bearing with us!
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This blog post comes courtesy of our chair Valerie Kiln-Barfoot (all opinions are her own)

Hospital living - it's another long stay in hospital for me and I've been thinking lately about what it means to have too just not 'stay' but 'live' in hospital. For me it's the lack of privacy that comes with communal living with strangers inc. medical staff and other patients. You're reduced to living in a small, completely open, 12ftx12ft cube with only a curtain to protect your modesty. You can hear (&smell) everything your fellow room mates are doing, from morning ablutions to Drs delivering terminal diagnosis. You see the problem is when I'm feeling rough I need to be left alone. My coping mechanism is to shrink inside myself & get through this as quickly as I can. This means that no I don't wanna see another picture of lil Jonny at this birthday party, no I don't wanna talk about how 'brave' I'm being, yes the peanut crumbs you're spewing all over my clean sheets will still kill me and no it is not ok for staff to let themselves through your curtains without asking, resulting in the whole ward seeing just what God gave you. Maybe I just need to write 'the 10 commandments' of living in hospital and demand people abide by them... Or you know I could just suck it up!
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