Support for Ventilator Users and those with sleep/breathing problems

When Are Trachs an Option?

http://www.post-poliopartners.org/SoCal/PPH%2010th/Saturday/Revised%20-%20When%20are%20Trachs%20an%20Option.pdf

 

22q and breathing problems.

https://www.facebook.com/groups/333011440061423/

A support group that is there for people to post information and give support and friendship to those with 22Q and breathing problems

 

Community Caring about Sleep Apnea diagnosis and Sleep Apnea treatment,

CPAP machines, Sleep Apnea surgery and dental appliances.

http://www.sleepguide.com/

So many people get a CPAP delivered to them, become frustrated and then give up. Others never even come to the realization that they have a common, chronic sleep disorder called Sleep Apnea — they think it’s their lot in life to be tired, irritable, miserable, depressed. One thing that is certain is that the outlook does not have to be so grim. Many people have successfully treated their Sleep Apnea through CPAP or other means and have turned around their lives.

This forum was started by Mike and other individuals who have sleep apnea and want to provide a friendly, open and inclusive forum to discuss anything and everything related to sleep apnea, a vastly under-diagnosed and commonly misunderstood condition.

If you want to wait for “experts” to give you the information and resources you need, this is not the place for you. If, however, you are an expert who puts your patients first or you are a patient ready to rely on yourself and the collective wisdom of a vibrant, intelligent community of individuals who have sleep apnea, and who recognize the importance of treating it properly, you’ve come to the right place. It’s a place to ask questions and to answer the questions of others, to find out what works and what doesn’t — tips and tricks for managing CPAP and other treatment options. It’s also a place where we can get to get to know each other. So ask a question, answer a question, post your picture or share with us your journey with sleep apnea. But most important, get involved. It’s your health and nobody is better equipped than you to get it back on track.

 

 This is our own facebook support group     

https://www.facebook.com/groups/49716687743/

if you are a family who has a child or family member with this breathing disability who is in need of support i am someone who has personal experience of this condition.
i was born with this condition and also I was born with a enlarged heart and a lung that did not work to its full ability, having enduring ill health but until a heart attack at 15 the doctors were unaware of the extent my health problems. i was then diagnosed with a heart attack and Ondines, prescribed with tablets and my mother was told that i was not to be expected to last two weeks, I am now 38 years old and happy to say that I am coping with my condition. If you feel isolated and need someone to talk to even if its only about day to day life please get in touch

 

 Facebook Congenital Central Hypoventilation Syndrome

Support Group

For people and family of people with CCHS; the rarest of the world’s most beautiful gems.GUIDELINES:1) Only people with CCHS and their close relatives are to be admitted. If a diagnosis is not confirmed and there are compelling grounds for admission, please refer to the administrators, and we will evaluate whether or not the applicant should be admitted.2) When you post a question, please keep i mind that all answers are based on personal experience, and that ALL medical advice should be discussed with your medical CCHS consultant. (We encourage everybody to read the extensive litterature atwww.cchsnetwork.org and to join the discussion board there to have as many qualified sources of knowledge and experience as possible.)3) When commenting on posts, please keep in mind that your particular issues, treatment, and situation are likely to be be very different from most others as CCHS is an extremely complex condition, and this is an international forum.4) Please keep your tone respectful at all times.5) If you feel any of these rules are being violated, please contact one of the administrators.6) The administrators preserve the right to delete comments that are offensive or misguiding, and to delete members who are in the group for the wrong reasons or are violating the guidelines consistently.

 

Irish Sleep Apnoea Trust ISAT

http://www.isat.ie/

The Irish Sleep Apnoea Trust (ISAT), non-political, non-profit, voluntary, advocacy, patient support group for sufferers (& families) of Obstructive Sleep Apnoea (OSA).

Welcome to the website homepage of the Irish Sleep Apnoea Trust, (ISAT) (in Gaelic) “Iontaobhas Apnoea Codlata na hÉireann“.  You will find our website is a great source of informative to you on sleep apnoea and indeed some other sleep-related disorders.  The website is easy to navigate and will render well in smartphones like iPhone and android.  Please return often as we regularly update.  It is essential to do so as our advocacy programme propagates.

If you feel you might suffer from a sleep disorder or have queries, comments or suggestions, complete the feedback form, send an Email, write or phone.

Our Contact Page carries all of the contact co-ordinates required for your easy decision on preferred method of interaction and communication with ISAT.

 

The Sleep Apnoea Trust Association

http://www.sleep-apnoea-trust.org/

The Sleep Apnoea Trust is a patient support charity run by patients for patients. It is dedicated to increasing understanding, diagnosis and treatment of this serious illness. We help patients and their families with information and telephone helplines. We also fund research into the condition and act as a pressure group for patients.

InVent Health

http://www.inventhealth.co.uk/case_respiratory_condition_ventilation.php

We are dedicated to providing outstanding care for our patients. Our highly skilled staff recognise that their experience and expertise in complex care can change the quality of life for patients and their families.

As a care provider for children and adults with long term, complex health care needs,

we work hard to make the lives of our patients, their families and our NHS colleagues better through the high standards outlined in our values statement and policies.

 

Narcolepsy UK 

http://www.narcolepsy.org.uk/

Narcolepsy UK is a charity (No. 1144342) that supports people with narcolepsy, their families, carers and others interested in improving their quality of life.

 

 

Wake Up to Sleep is ResMed’s comprehensive sleep apnea support community intended to help people along their entire journey—from awareness to diagnosis to successful treatment.https://www.wakeuptosleep.com/

Features of the community:Treatment news and information

Educational videos and FAQs

Inspirational patient stories

 

http://www.ventusers.org/

International Ventilator Users Network’s mission is to enhance the lives and independence of home ventilator users and polio survivors through education, advocacy, research and networking.

 

http://www.tracheostomy.com/

Tracheostomy.com

(Aaron’s Tracheostomy Page) is an independent nonprofit project that is family run, family centered and impartial. Every attempt is made to provide information that follows accepted standards of care for pediatric tracheostomy care in a home setting. This information is free of charge and provided without annoying advertisements.

 

Tracheotomy Facebook support group
The Humber Sleep Apnoea Support Group
(HSASG) is a voluntary organisation which is supported by the Sleep Centre at Castle Hill Hospital near Hull. It is the intention of the group to undertake a number of activities to promote understanding of the issues related to Sleep Apnea.
St James Sleep Apnea Support Group

ResMed

http://www.realsleep.co.uk/rsuk/dvd-content/index.html

 

Facebook Group Sleep Apnoea Awareness

https://www.facebook.com/groups/617340258295179/

 

Talk about Sleep disorder message board 

http://www.talkaboutsleep.com/message-boards/

Sleep apnea support group

https://www.facebook.com/groups/303063869722428/members/

Irish Sleep Society 

http://www.irishsleepsociety.org/linksiss.htm

 

My child has CCHS

https://www.facebook.com/groups/146217082063376/

CCHS

https://www.facebook.com/groups/cchs.international/

 

Sleep apnea 

https://www.facebook.com/groups/18253554608/

 

The HoseHeads (Sleep Apnea Support Group)

https://www.facebook.com/groups/188592544526552/

 

Moms of Trach Babies (Facebook pages)

https://www.facebook.com/groups/momsoftrachbabies/

https://www.facebook.com/MomsOfTrachBabies