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OUCH(UK) Organisation for the Understanding of Cluster Headache

Nice to join you.

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#1 Wed, 04/10/2017 - 19:04
Chloesdad
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Last seen: 1 week 4 days ago
Joined: 03/10/2017 - 11:24

Nice to join you.

Think I may of posted this in the wrong place originally, technology is not my strong point and this is the first forum I have ever been part of... Hi my name is Neil I am the father of a recently ch diagnosed 15 year old girl named Chloe. It has been a very frightening and stressful few weeks especially for Chloe but we have the all important diagnosis and we are in the process of having oxygen delivered tomorrow after what I can only describe as a challenging time trying to convince several doctors of it's value and necessity in giving Chloe relief. We are just over three weeks into Chloe's first episode of attacks and we are desperately hoping they are episodic and not chronic. We have relied on the OUCH helpline for advice several times during some dark days where we felt we were at loggerheads with health professionals, speaking to Val she gave us the advise and the strength along with the know how that we needed to continually argue our case against what I describe as a professional arrogance until we finally got a paediatric doctor that listened and was willing to read the files on oxygen therapy kindly Emailed to us to help persuade by OUCH. We know we cannot hold the medical profession responsible for Chloe's condition I do however feel certain individuals could have ended her suffering sooner if they had only been prepared to listen and willing to look into what we was telling them a bit more. We hope with Chloe being so young that a viable cure will exist eventually in the not too distant future, we are a strong family and it is what it is, we can only accept it and look to the future.. After all Chloe has so many important years in front of her.

Thu, 05/10/2017 - 18:06
Dorothy
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Last seen: 4 days 16 hours ago
Joined: 19/02/2014 - 10:16

Welcome to OUCH, Neil. I'm so sorry you have to be here but glad you found us and got advice from Val when you needed it. I know that as parents, we would rather have the pain ourselves than watch our children suffer, so it must have been awful for you all. I have high hopes that because of the brilliant experts we have on our side, new treatments will improve the lives of sufferers and I feel sure that there will be a brighter future for Chloe.

All the best

Dorothy

Sat, 07/10/2017 - 09:00
ElizabethK
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Last seen: 18 hours 12 min ago
Joined: 26/02/2014 - 14:26

A welcome from me too!  I wish Chloe well with the oxygen at home, it is horrendous to see your child suffer in any way and you would rather go through it for her!  Please call the Helpline any time you may have to leave a message sometimes but we will always call you back!

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