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    <title>CGD Community Forum</title>
    <link>http://www.cgd.org.uk/phorum/index.php</link>
    <description><![CDATA[]]></description>
    <language>en</language>
    <pubDate>Wed, 04 Jun 2008 06:12:23 -0400</pubDate>
    <lastBuildDate>Wed, 04 Jun 2008 06:12:23 -0400</lastBuildDate>
    <category>CGD Community Forum</category>
    <generator>Phorum 5.1.23</generator>
    <ttl>600</ttl>
    <item>
      <title>[First General Public Forum] Contacts?</title>
      <link>http://www.cgd.org.uk/phorum/read.php?6,63,63#msg-63</link>
      <author>hannard</author>
      <description><![CDATA[Hi Everyone!!

I was wondering if any of you guys live in the Hampshire area?  We are moving down to Fareham in August and I'm finding it all a bit daunting... new hospital, new doctors etc..etc...
I would love to be in touch with any of you  just for a chat or coffee - some mutual support - particularly as we are missing Rhian's wisdom and CGD is so new to us.  Alex has been diagnosed for a year now - he had colonoscopy and endoscopy which shows lots of disease and we don't know where we will be going from here!!?

I've always felt that localised support networks would be a great idea.... wonder why we as a CGD community don't do more of it?  Sometimes just a cup of cofee and some reassurance from someone who has experienced what you are going through is all you need, right?

Would love to hear your views on this???

Much love to all

Lou XX]]></description>
      <category>First General Public Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?6,63,63#msg-63</guid>
      <pubDate>Wed, 04 Jun 2008 06:12:23 -0400</pubDate>
    </item>
    <item>
      <title>[Youths - under 25 Forum] Re: Australia</title>
      <link>http://www.cgd.org.uk/phorum/read.php?8,10,62#msg-62</link>
      <author>shazz_nen15</author>
      <description><![CDATA[Hi Rhian

Sorry It's taken so long to get back to you,, I havent been on here in ages.. I know that I am 1 in 4 million, so i dont think there is many of us,  We have Jeans For Genes out here, I am a Jeans Genie and help raise lots of money for the organisation,, we have it in August so i cant wait!!! I would love to come to the UK.. My mum and I have spoken about it.. we would love to come and talk to other people like you who have to same condition!!!

Love Shannen :-)]]></description>
      <category>Youths - under 25 Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?8,10,62#msg-62</guid>
      <pubDate>Thu, 08 May 2008 21:33:27 -0400</pubDate>
    </item>
    <item>
      <title>[First Individuals and Families Forum] Re: about lung infection</title>
      <link>http://www.cgd.org.uk/phorum/read.php?1,56,61#msg-61</link>
      <author>sarallyainora</author>
      <description><![CDATA[Hi everyone, 

Thanks Gareth all the words you wrote to me.
My brother is in Hospital, he has a fever  heat aroud 40, and find nothing what it cause.
That is why I am worry so much]]></description>
      <category>First Individuals and Families Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?1,56,61#msg-61</guid>
      <pubDate>Fri, 02 May 2008 09:18:14 -0400</pubDate>
    </item>
    <item>
      <title>[Youths - under 25 Forum] Re: Who likes Dr Who</title>
      <link>http://www.cgd.org.uk/phorum/read.php?8,25,60#msg-60</link>
      <author>Gareth</author>
      <description><![CDATA[i've always been a sci fi and fantasy fan lol, i like stargate atlantis too and have just finished watching the dvd collection of firefly.

never seen prison break, but i did see some episodes of lost before i became lost when they swapped the tv scedule times and channels lol


Gareth]]></description>
      <category>Youths - under 25 Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?8,25,60#msg-60</guid>
      <pubDate>Fri, 02 May 2008 06:59:07 -0400</pubDate>
    </item>
    <item>
      <title>[Youths - under 25 Forum] Re: Facebook group name change</title>
      <link>http://www.cgd.org.uk/phorum/read.php?8,24,59#msg-59</link>
      <author>Gareth</author>
      <description><![CDATA[the group now has 20 members and a few people have been in contact with me,

 i became good friends with the van ness family in america whose son sean had cgd, sadly he became very unwell and a week or so ago he passed away, I am still in contact with the family, who have thanked me for setting up the group and telling them my story.

Gareth]]></description>
      <category>Youths - under 25 Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?8,24,59#msg-59</guid>
      <pubDate>Fri, 02 May 2008 06:51:42 -0400</pubDate>
    </item>
    <item>
      <title>[First Individuals and Families Forum] Re: about lung infection</title>
      <link>http://www.cgd.org.uk/phorum/read.php?1,56,58#msg-58</link>
      <author>Gareth</author>
      <description><![CDATA[I'll message you about my self, but i thought i might write here for others.


I have CGD, and have suffered from many lungs infection which have damaged part of lungs with lots of scar tissue, a scan found that i have condition on my lungs called Bronchiectasis.

i have inhalers, anitbiotics, and oxygen over night. I was on interferon but found that it did not work for me.

When my lungs are not infected i do some basic normal activities, but i often need someones help

at the moment my lungs are not that good as i have a chest cold.

Gareth]]></description>
      <category>First Individuals and Families Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?1,56,58#msg-58</guid>
      <pubDate>Fri, 02 May 2008 06:39:46 -0400</pubDate>
    </item>
    <item>
      <title>[First General Public Forum] Re: Congratulations on your CGD-forum</title>
      <link>http://www.cgd.org.uk/phorum/read.php?6,46,57#msg-57</link>
      <author>Gareth</author>
      <description><![CDATA[Hi
i'm Gareth, i have CGD, and have found talking to others like simon very useful.

:)]]></description>
      <category>First General Public Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?6,46,57#msg-57</guid>
      <pubDate>Fri, 02 May 2008 06:28:47 -0400</pubDate>
    </item>
    <item>
      <title>[First Individuals and Families Forum] about lung infection</title>
      <link>http://www.cgd.org.uk/phorum/read.php?1,56,56#msg-56</link>
      <author>sarallyainora</author>
      <description><![CDATA[Hi Everyone,


I have a brother who is a CGD patient and nowadays has a serious lungs infection.
I am looking for someone who has the same problem, or  know more about it.
Can help us, what to do.
We are not sure he has an aspergillus infevtion.
He use V-fend, Imukin nowadays.
Sumetrolin from the beginning.
I would be happy if someone can help us or tell stories, or has experience about it.
Thank 
has a good health for everyone]]></description>
      <category>First Individuals and Families Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?1,56,56#msg-56</guid>
      <pubDate>Thu, 01 May 2008 05:42:56 -0400</pubDate>
    </item>
    <item>
      <title>[First Individuals and Families Forum] Re: Bringing up Baby</title>
      <link>http://www.cgd.org.uk/phorum/read.php?1,51,55#msg-55</link>
      <author>hannard</author>
      <description><![CDATA[Hiya....
Our little boy was diagnosed last July and for us it has been a complete reality check and made us put many things firmly in perspective!  
I don't worry about very much now... used to stress about  my work, him eating the right food, reading the right books,etc.,etc., but now.........just the moment and the management of his CGD!
We really value and cherish the small moments now.... when he was critically ill in PICU last year, my overwhelming thoughts were about how unhappy he had been due to the pressure that we were putting on ourselves and him,  to be the &quot;perfect child&quot; who acheived at school and ate his vegetables etc etc.....  unknown to us, he had been unwell for quite some time and it had made him quite dificult and grumpy..... 
Now, instead of going down the discipline route, we are stress free and much more laid back.... it works!!  If he gets very  poorly again, we will know that yesterday and the day before was a good and happy one, despite being ill!!!
Live for the day!!]]></description>
      <category>First Individuals and Families Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?1,51,55#msg-55</guid>
      <pubDate>Tue, 18 Mar 2008 13:15:10 -0400</pubDate>
    </item>
    <item>
      <title>[First Medical and Researchers Forum] Re: Crohns Disease</title>
      <link>http://www.cgd.org.uk/phorum/read.php?7,53,54#msg-54</link>
      <author>ranger79</author>
      <description><![CDATA[I have found avoiding wheat and dairy products helps greatly I am now just on pentasa and no steroids which is great.,]]></description>
      <category>First Medical and Researchers Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?7,53,54#msg-54</guid>
      <pubDate>Sun, 24 Feb 2008 12:57:26 -0500</pubDate>
    </item>
    <item>
      <title>[First Medical and Researchers Forum] Crohns Disease</title>
      <link>http://www.cgd.org.uk/phorum/read.php?7,53,53#msg-53</link>
      <author>ranger79</author>
      <description><![CDATA[Anyone have experiences of this and any advice.]]></description>
      <category>First Medical and Researchers Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?7,53,53#msg-53</guid>
      <pubDate>Sun, 24 Feb 2008 12:54:55 -0500</pubDate>
    </item>
    <item>
      <title>[First General Public Forum] Re: Congratulations on your CGD-forum</title>
      <link>http://www.cgd.org.uk/phorum/read.php?6,46,52#msg-52</link>
      <author>ranger79</author>
      <description><![CDATA[Hi All
Great to see so many people using the forum.  My name is simon and I have CGD, never let it stop me doing anything going to start a job on the farnes islands next month.  Hope to see more postings soon.  Thanks to you all si]]></description>
      <category>First General Public Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?6,46,52#msg-52</guid>
      <pubDate>Sun, 24 Feb 2008 12:50:30 -0500</pubDate>
    </item>
    <item>
      <title>[First Individuals and Families Forum] Bringing up Baby</title>
      <link>http://www.cgd.org.uk/phorum/read.php?1,51,51#msg-51</link>
      <author>CNS</author>
      <description><![CDATA[Hi all,

I decided to turn this question into a new thread as I would love it if people could share their thoughts.

Do you think that parents with a child with CGD get a 'reality check,' and see unlikely dangers that are obsessed over in the news with more perspective?  Or do you think that the fears related to CGD have a knock on effect to other areas of safety concern, making a parent more vulnerable to other worries? 

How do you think either of these  scenarios would affect the child with CGD?]]></description>
      <category>First Individuals and Families Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?1,51,51#msg-51</guid>
      <pubDate>Mon, 18 Feb 2008 08:43:59 -0500</pubDate>
    </item>
    <item>
      <title>[First General Public Forum] Bringing up Baby</title>
      <link>http://www.cgd.org.uk/phorum/read.php?6,21,50#msg-50</link>
      <author>CNS</author>
      <description><![CDATA[I think you have a point Jamesr, about societies scare mongering affecting those with a more valid reason for worry.  

The amount of airtime on news broadcasts and space in the papers given over to frightening stories about the vulnerability of children is irresponsibly disproportionate.  With every parent having heightened worries about their own child, can they contribute to looking out for your child or be sympathetic to your worries, the way one would hope they would in a community setting?

Do you think that parents with a child with CGD get a reality check, and see dangers with more perspective?  Or do you think that the fears related to CGD have a knock on effect to other areas of safety concern, making a parent more vulnerable to other worries?]]></description>
      <category>First General Public Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?6,21,50#msg-50</guid>
      <pubDate>Mon, 18 Feb 2008 08:35:46 -0500</pubDate>
    </item>
    <item>
      <title>[First General Public Forum] Re: facebook group &quot;living with CGD&quot;</title>
      <link>http://www.cgd.org.uk/phorum/read.php?6,20,49#msg-49</link>
      <author>jamesr</author>
      <description><![CDATA[Hi Gareth,

I find it interesting to see the figures on these forums - the many  times people are looking at a CGD forum posting compared to the smaller number  of people who decide to join in and say something themselves. There is nothing wrong with that. In fact it makes me excited to think there might be a lot of untapped potential in our community - people observing things from the edge who might like to get more stuck in as time goes on. The Trust is keen to listen to and deliver what we need and want, so the more activity on these forums the better.

It can be hard to know what to say. Your posting for example really shows some of the things you have been through and one answer is &quot;Wow. How does he stay on top of all this?&quot;

Keep it up and thanks for the posting.
jamesr]]></description>
      <category>First General Public Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?6,20,49#msg-49</guid>
      <pubDate>Mon, 04 Feb 2008 08:36:14 -0500</pubDate>
    </item>
    <item>
      <title>[First General Public Forum] Re: How many have CGD?</title>
      <link>http://www.cgd.org.uk/phorum/read.php?6,21,48#msg-48</link>
      <author>jamesr</author>
      <description><![CDATA[Gregor,

I have replied to one of your other messages too. Really interesting to talk to one of the more experienced men with CGD in the Netherlands. I think about the fact that UK parents in general are much more worried about bringing up their children these days - we never used to have so many tv programmes telling us how to be good parents etc. So I wonder if the parents who have a genuine reason to be vigilant (eg with immune-compromised sons and daughters) are even MORE worried than say 10 years ago. On the other hand I've met lots of laid back, positive families dealing with CGD who do the opposite, and celebrate the good things in life even more because they are used to more uncertainty, unpredictable  visits to hospital etc.

How much support does Netherlands society give someone like you? (sorry this is quite a big question)

Jamesr]]></description>
      <category>First General Public Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?6,21,48#msg-48</guid>
      <pubDate>Mon, 04 Feb 2008 08:25:54 -0500</pubDate>
    </item>
    <item>
      <title>[First General Public Forum] Re: Congratulations on your CGD-forum</title>
      <link>http://www.cgd.org.uk/phorum/read.php?6,46,47#msg-47</link>
      <author>jamesr</author>
      <description><![CDATA[Hi Gregor,

It is especially good to see messages coming in from families outside the UK. Personally I think the CGD community must stick together and support each across national boundaries if our voice is going to be heard loudly enough. I am sure people will appreciate your upbeat attitude and invitation to communicate with you. It is been a while since I looked at the forums and I'm going to try to look more often now. Are there other people in your country you can tell about the CGD Research Trust?

Jamesr
(father of a child with CGD)]]></description>
      <category>First General Public Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?6,46,47#msg-47</guid>
      <pubDate>Mon, 04 Feb 2008 08:15:24 -0500</pubDate>
    </item>
    <item>
      <title>[First General Public Forum] Congratulations on your CGD-forum</title>
      <link>http://www.cgd.org.uk/phorum/read.php?6,46,46#msg-46</link>
      <author>Grégor</author>
      <description><![CDATA[Hi to all,

Yesterday I received the CGD newsletter and found out the forum has started.
Congratulations on it!

I'm a 44 yrs. old X-linked CGD-patiënt, married and having a beautifull daughter of 9˝ (carrier).
We live in the Netherlands. I'm allways willing to answer questions.

From experience in the American CGD-Café (an American forum on CGD) I know that, in time, it will become a good source of information. 
Overhere in the Netherlands there is only a forum on primary immunodeficiencies in general. 
CGD only takes a small part in it. Just 4 CGD-members (14%) in the forum.

Greetings, and live your life!
Grégor]]></description>
      <category>First General Public Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?6,46,46#msg-46</guid>
      <pubDate>Sun, 06 Jan 2008 04:29:34 -0500</pubDate>
    </item>
    <item>
      <title>[First General Public Forum] Re: How many have CGD?</title>
      <link>http://www.cgd.org.uk/phorum/read.php?6,21,45#msg-45</link>
      <author>Grégor</author>
      <description><![CDATA[Hi to all in the UK

Here's a message from the Netherlands.
Overhere there are about 20 x-linked CGD-patiënts.
(I'm the oldest with 44 yrs.)

I don't know numbers of the other types CGD.

Greetings, and live your life!
Grégor]]></description>
      <category>First General Public Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?6,21,45#msg-45</guid>
      <pubDate>Sun, 06 Jan 2008 04:13:02 -0500</pubDate>
    </item>
    <item>
      <title>[First Medical and Researchers Forum] Re: A DGH perspective</title>
      <link>http://www.cgd.org.uk/phorum/read.php?7,34,44#msg-44</link>
      <author>kokyavuz</author>
      <description><![CDATA[what do you think about DHR 123 test for CGD diagnosis and subgroup detection. Dr yavuz]]></description>
      <category>First Medical and Researchers Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?7,34,44#msg-44</guid>
      <pubDate>Sun, 30 Dec 2007 15:01:53 -0500</pubDate>
    </item>
    <item>
      <title>[First Medical and Researchers Forum] Care in Adult Services</title>
      <link>http://www.cgd.org.uk/phorum/read.php?7,43,43#msg-43</link>
      <author>CNS</author>
      <description><![CDATA[Hello,

I was wondering about the experiences out there of health care professionals transferring CGD patients to adult services when there is no local adult immunology service?  When the patients are cared for in paediatrics they often have a fast track to a ward, but this rarely seems to translate to adult services, with instead CGD patients spending long periods of time in A&amp;E being fobbed off by staff who don't know them.  
How do people get around this in their local areas?]]></description>
      <category>First Medical and Researchers Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?7,43,43#msg-43</guid>
      <pubDate>Wed, 12 Dec 2007 10:11:23 -0500</pubDate>
    </item>
    <item>
      <title>[Youths - under 25 Forum] Australia</title>
      <link>http://www.cgd.org.uk/phorum/read.php?8,10,42#msg-42</link>
      <author>CNS</author>
      <description><![CDATA[Hi Shannen,

do you know if there are many people in Australia with CGD?  Are there any organisations like ours out there? Maybe one day you could visit the UK when we have a CGD get together like the one we recently had in Windsor?

Love Rhian]]></description>
      <category>Youths - under 25 Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?8,10,42#msg-42</guid>
      <pubDate>Wed, 12 Dec 2007 09:57:10 -0500</pubDate>
    </item>
    <item>
      <title>[First Individuals and Families Forum] Re: Please post a message here</title>
      <link>http://www.cgd.org.uk/phorum/read.php?1,6,41#msg-41</link>
      <author>Nigel H</author>
      <description><![CDATA[I would just like to say how much we enjoyed the weekend at Windsor, we learned such a lot of new things that are happening with in CGD. Our son came with us and felt the talks given by all guests were very helpful. it is the first one we have been to since the first one held in Kensington and must say we hope to make it to the next one.Thanks again to Rosemarie for getting us to come.]]></description>
      <category>First Individuals and Families Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?1,6,41#msg-41</guid>
      <pubDate>Sat, 08 Dec 2007 17:23:30 -0500</pubDate>
    </item>
    <item>
      <title>[First General Public Forum] Re: How many have CGD? &amp; alternative diagnosis</title>
      <link>http://www.cgd.org.uk/phorum/read.php?6,21,40#msg-40</link>
      <author>Gareth</author>
      <description><![CDATA[Hi thanks for that interseting stuff.
 Both myself and my brother were treated for crohns for many years before they said cgd, i was 20 and my brother was about 18.
For many year i troubled with very bad lungs which they put down to a side effect of the crohns.]]></description>
      <category>First General Public Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?6,21,40#msg-40</guid>
      <pubDate>Fri, 07 Dec 2007 11:52:33 -0500</pubDate>
    </item>
    <item>
      <title>[First Individuals and Families Forum] CGD Weekender</title>
      <link>http://www.cgd.org.uk/phorum/read.php?1,6,39#msg-39</link>
      <author>CNS</author>
      <description><![CDATA[Hi Everyone,

I just wanted to say it was really great to see so many people at the weekend get together down in Windsor.  I was particularly pleased that so many new families attended, and I hope, found it helpful.  It was great to see the kids play together on the boat, meeting someone else at last who had the same condition as themselves.  

What did everyone think of the topics covered in the meetings?

Could we have some of the pictures of the event on the web site?]]></description>
      <category>First Individuals and Families Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?1,6,39#msg-39</guid>
      <pubDate>Tue, 27 Nov 2007 05:22:39 -0500</pubDate>
    </item>
    <item>
      <title>[First Medical and Researchers Forum] Re: A DGH perspective</title>
      <link>http://www.cgd.org.uk/phorum/read.php?7,34,37#msg-37</link>
      <author>brahmsegal</author>
      <description><![CDATA[I have a feeling that Dr. Laurent's experience is typical when confronted with patients with rare immunologic disorders. When I was a house officer, I had a vague idea about what CGD was from reading summaries in text books. When I started my sub-specialty training in Infectious Diseases at the National Institutes of Health in the U.S., I encountered several ill patients with CGD on my 1st day, some with infections I hadn't previously heard of. I was fortunate because the NIH was a world-wide referral center for CGD patients and I was trained by top-level clinicians and researchers (Steve Holland, Harry Malech, and John Gallin). Although my clinical work is now focused on infections in malignancy, I have an occasional CGD patient and continue to do basic science research using the CGD mouse model. 

This paper, though a bit outdated, reviews the broad subject of primary phagocytic disorders. Segal BH, Holland SM. Primary phagocytic disorders of childhood. Pediatr Clin North Am. 2000 Dec;47(6):1311-38. It may be of value to physicians interested in CGD and other phagocytic disorders. 

The CGD Research Trust provides an invaluable resource by supporting both education and research related to this rare disorder.

Cheers,

Brahm Segal, MD]]></description>
      <category>First Medical and Researchers Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?7,34,37#msg-37</guid>
      <pubDate>Sat, 24 Nov 2007 18:28:12 -0500</pubDate>
    </item>
    <item>
      <title>[First General Public Forum] Re: How many have CGD? &amp; alternative diagnosis</title>
      <link>http://www.cgd.org.uk/phorum/read.php?6,21,35#msg-35</link>
      <author>CNS</author>
      <description><![CDATA[Hi Gareth,

in another forum you mention that you and your brother were diagnosed in your late teens/early twenties.  It is likely that there are many people with CGD lost in other services, because the CGD is affecting one part of them in particular and so they are matched up to the nearest fitting diagnosis.  For example a patient may be thought to have Crohn's disease when in fact they have CGD colitis, they may have most of the symptoms of Crohns but perhaps a few others that are not explained by the diagnosis, such as unusual infections.

Does anyone else have stories of patients treated in other specialisms (not immunology) who went on to be diagnosed as CGD?]]></description>
      <category>First General Public Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?6,21,35#msg-35</guid>
      <pubDate>Thu, 22 Nov 2007 11:58:45 -0500</pubDate>
    </item>
    <item>
      <title>[First Medical and Researchers Forum] A DGH perspective</title>
      <link>http://www.cgd.org.uk/phorum/read.php?7,34,34#msg-34</link>
      <author>su laurent</author>
      <description><![CDATA[As a general paediatrician in a DGH I have only only patient (to my knowledge) with CGD but unfortunately it took several doctors and many months to reach his diagnosis. 
We see our patient on the ward or in PAU every few weeks whereas GOSH (while having overall authority) sees him less frequently. We have to provide a very responsive local service 24/7/365  while coordinating very closely with our colleagues in Great Ormond Street. As with all rare conditions it is important that the relevant staff are well briefed on the protocol for a CGD patient and that they seek help appropriately. This is never more important than out of hours when staff are encouraged to seek advice form the on call consultant initially but frequently need to get instruction from a GOSH immunologist. It can all go pear shaped when junior staff lwho know him well eave posts or there is a locum on duty. Factors which help a family feel secure in the  care they receive include a rapid response (we use a &quot;fast track card&quot; ), making an isolated cubicle available, warning them of any temporary infections on other wards, taking small things seriously, doing blood tests fast but not with abandon, and caring about the child and family's emotional needs. We aim to avoid our patient going to A and E if at all possible, he comes directly to PAU. On a more general note, we have a liaison child psychiatry service which has been invaluable in providing psycological support and counselling for parents as well as children in many chronic illness situations. It can be difficult to wean parents back to GP care for every day complaints until they feel happy with how well the hospital responds to GP phone calls, it can also be hard to give the GP the confidence to make any decisions about a CGD patient but we feel that th GP does have an important role to play. Our patient's parents are now very happy with the way in which GP, local hospital and GOSH communicate to optimise his care. 
I would be interested in hearing form other health professionals about their experiences as it has taken us time to reach the point we are at now. All tips would be welcome! The CGD website seems to be every informative for parents and professionals.]]></description>
      <category>First Medical and Researchers Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?7,34,34#msg-34</guid>
      <pubDate>Wed, 21 Nov 2007 05:51:00 -0500</pubDate>
    </item>
    <item>
      <title>[First General Public Forum] Re: How many have CGD?</title>
      <link>http://www.cgd.org.uk/phorum/read.php?6,21,33#msg-33</link>
      <author>ddenning</author>
      <description><![CDATA[Gareth,
It is thought to afffect about 1 in 250,000 births. Therefore there should be about 240 people with CGD.  But unfortunately some die in childhood (often because the diagnosis is missed). We believe there are ~70 adults with CGD, which is an unrepresentation.

Carriers also get symptoms so others are affected but are not classified as CGD.
David Denning
Professor of Medicine and Medical Mycology]]></description>
      <category>First General Public Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?6,21,33#msg-33</guid>
      <pubDate>Tue, 20 Nov 2007 13:00:49 -0500</pubDate>
    </item>
    <item>
      <title>[First General Public Forum] Re: How many have CGD?</title>
      <link>http://www.cgd.org.uk/phorum/read.php?6,21,32#msg-32</link>
      <author>ddenning</author>
      <description><![CDATA[Gareth,
It is thought to afffect about 1 in 250,000 births. Therefore there should be about 240 people with CGD.  But unfortunately some die in childhood (often because the diagnosis is missed). We believe there are ~70 adults with CGD, which is an unrepresentation.

Carriers also get symptoms so others are affected but are not classified as CGD.
David Denning
Professor of Medicine and Medical Mycology]]></description>
      <category>First General Public Forum</category>
      <guid isPermaLink="true">http://www.cgd.org.uk/phorum/read.php?6,21,32#msg-32</guid>
      <pubDate>Tue, 20 Nov 2007 11:48:58 -0500</pubDate>
    </item>
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