Channel 4 - The Curious Case of the Clark Brothers

[help2hand]

Did anyone see the above programme on UK Channel 4 last night - if so, can anyone let me have a copy as I missed it? These brothers got Leukodystrophy in adulthood, and I first saw their story in the Lincolnshire Echo on May 2 2012 (I used to live in Lincoln) soon after I got my diagnosis of AMN. We all know the links of AMN to ALD, and I wanted to see the programme for that reason, but found out too late.

For me the odd thing is that the Clarks have family connections to Hull. My brother and I also have family links to Hull via our late mother; and recently I have found another AMN diagnosed person connected to Hull. One city, 5 cases - coincidence?

[COwithAMN Administrator AMN EASIER Volunteer]

I have not seen it yet but will watch it in replay. You could also watch it from the web site for 7 days at channel4.com/programmes/the....

Does anyone know what specific leukodystrophy the two brothers have?

Best wishes

Chris

[Cherie in reply to COwithAMN]

It is on tonight (28th) on 4seven which is Freeview46,Freesat127,Sky140 or Virgin195.

[Cherie]

On the programme they said it was unknown.

[AussieDi]

Sad but interesting. Has the ALD been dormant in their bodies for 30-40 yrs, when generally our young sons were affected this way between 7-14yrs old. This would be a good study for ALD/AMN scientists re their lifestyle etc

Chris - I would like to see this video but couldn't get access to the video on this site in Australia, any suggestions as to how I can access it from Australia? Would it be on utube? I'm not very savy with these things!

[COwithAMN Administrator AMN EASIER Volunteer in reply to AussieDi]

Have you tried accessing it on the Channel 4 site? channel4.com/programmes/the....

I expect you have, and it's not viewable from outside the UK.

Sorry, i don't have a way or recording it and putting it on YouTube. Maybe someone will - let's hope.

Sorry i can't help. I will be watching it tonight or tomorrow and will see if I can do a synopsis.

Chris

Chris

[AussieDi]

Thanks Chris, and yes I've tried but no available access from here, thanks anyway.

[COwithAMN Administrator AMN EASIER Volunteer]

I have just found the full film on YouTube at youtube.com/watch?v=KslHp8F...(Not working as expected?)

Note that the leukodystrophy is described as an "unknown strain". It's not AMN or ALD. There are a number of known strains of leukodystrophy. The ULF site lists about 40.

None of which is much consolation to the Clark family.

Best wishes

Chris

[help2hand]

Channel 4 say log on at channel4.com/programmes/the.... i hope that helps. Malcolm

[monkeybus]

Folks, I am bumping this thread.

youtube.com/watch?v=ugK9_Qc...(Not working as expected?)

Here is the vid. Worth a watch.