a possible cure for dilated cardiomyopathy? (peters condition)

[misdee]

will be too late for us, but hope for the future?

[edam]

Potentially very exciting. Let's hope the trials find a treatment which is effective and safe.

[misdee]

i hope it proves successful, a girl on the dcm board has called to join trials.

[misdee]

bump, tho it may too much at this time of night.

[misdee]

stem cells are amazing. have printed it off for peter at the hospital.

[noddyholder]

I have been looking at going abroad for this if my condition gets much worse.About 30 people have been successfully treated so far with stem cells Very exciting possibility for all organs Fingers crossed xxHow are you Misdee and Peter?Hope he is back on the list soon

[macwoozy]

OMG I assume this applies to HCM as well. This is amazing, I never though they'd ever find a cure.

[SoupDragon]

Wow!

[misdee]

great isnt it.

[Joanie]

Fantastic news I hope. They do amazing things with stem cells now don't they. I knew they were looking at this, but thought it was going to be sometime ahead. I don't really understand how this works, but would this work for people with inherited cardiomyopathy as wouldn't the faulty gene be in the stem cell too? Hmm - I think someone cleverer than me is going to correct me on this.

ps - hi Misdee and MacWoozy etc long time no speak. How's Peter? and how are you? haven't heard for a while.

[macwoozy]

Hi Joanie, hope your dh is still doing well.

That's a good point, I really don't know much about it at all TBH, normally I look for as much info as possible on the internet but I don't want to start putting my hopes up just yet. Would anyone be able to answer Joanie's question???

[misdee]

thingsd seem to be progresing well joanie. peter will hopefully be back on the list next week.

i called the number on the article, they are going to send some info out, dont know if peter can be a good candidate or if he will agree to it, but it would be good if it could help him. but he is in end stage heart failure and nothing else can be done now.

[Joanie]

Hi there M & M (lazy!)
Saw your post on the other thread misdee. Hopefully you're feeling more positive today. Fantastic if peter has made it back onto the list. Its a funny old life being pleased about going on the transplant list, but YKWIM.

Hope it makes you feel better, not worse to know that my Peter is well - perfectly normal now, in fact probably better as he is so happy and also doesnt have to think twice before he does anything now, he just does it. He has loads of medication of course for ever, but he is feeling v good at mo. In fact we both have to keep reminding ourselves that it really did happen, its all like a (bad) dream now. The change is amazing. Of course it doesnt happen like that for everyone, but hopefully with your P being young, he will be lucky.

Rambling now but...its only when we go back for his check-ups that it all comes back to us. More so for me than him as I was the one travelling all the time, he only saw it from an ambulance. It did get to be a routine and I almost missed it in a funny way when I didn't have to go anymore (the routine journey and seeing him in hospital and talking to the staff all the time was a kind of comfort blanket IYKWIM).

Peter is madly spoiling the kids with things now, to 'make up for lost time' and also 'cos I don't know how long I've got' which is v pragmatic of him. Anyway he's enjoying life.

[misdee]

peter makes me laugh (this is going to get confusing with peter and peter lol) as he is talkingof more kids, er no, but yes etc.

i do wonder how we will cope without harefield, like you say its a secruity blanket, i cant remember how long peter was in for, but so far for us its been 3months this time, plus the other months throughout the year. i cant wait to get to the point you are your family are at, to be at the all 'it was a bad dream' stage would be great. how did peter cope with the scarring? any tips for us?

[tamum]

Joanie, you're absolutely right about the faulty gene, but I think the idea would be that the damage takes time to accumulate, so you would lay down new heart muscle that would work for a while. I guess it would mean repeated injections. The other possibility would be that having made stem cells it is technically possible to repair the gene, but I'm not aware of this having being done in humans yet. I have to say I know a lot about genes but very little about cardiomyopathy though.

Misdee, I will keep my fingers crossed for Peter, as ever.

[Joanie]

Tamum,
hmm interesting. Our DS developed DCM (or RCM similar they're not sure yet) whilst in utero (spl?) so not sure if that would help??
Misdee - scarring?? Barely visible now - particularly with all the extra hair......
Do you like the Burt Reynolds look?
Better go, cos at work, might not be back till next work day (weds) unless I have time at home (ha ha ha) so ttfn and take care ya'll xxx
ps - i'll be checking about the stem cell stuff then tamum, so still post - ill be interested to read it when I can.

[tamum]

Oh yes, Joanie, if the damage is done in utero then you're right, I can't see how it would help unless they were able to do gene targeting (which will come, I'm sure, it just opens up new cans of worms). I was thinking of the later-onset forms. I'll try and read up a bit more and get back to you, although it sounds as though you've grasped it all really

[macwoozy]

tanum, I know you said you don't know much about cardiomyopathies, but as you know alot about genes, I wondered if you might be able to tell me if this new trial might help with hypertrophic cardiomyopathy. This is a condition wherby the heart muscle becomes overgrown, and the heart cells are all in disarray. I presume adding stem cells wouldn't reduce the extra heart muscle? Would it have to be done in the very early stages of the desease? As you can tell I haven't a clue about stem cells.

[tamum]

macwoozy, I am wary of sounding off about stuff I'm not familiar with but my honest opinion (and bear in mind that it's no more than that) would be that adding stem cells at any stage of hypertrophic cardiomyopathy might make things worse. Hypertrophy could be caused by activated stem cells, it's certainly been suggested to be the case in animal models, so it kind of sounds like the worse thing you could do. I really may well be wrong though. Sorry I can't help more!

[macwoozy]

Thanks tanum, of course that makes sense, I don't know what I was thinking. Kind of hoped that with the ablation techniques it might be possible to replace with new stem cells, but I know that all sounds stupid now. Thanks for the info though.

[tamum]

I guess the other thing to bear in mind is that lots of other stem cell therapies that are being suggested and trialled use donor stem cells, so that's always a possibility. If the original stem cells are the main source of the problem then it's conceivable that normal stem cells might compete in some way to correct the defect. I really hope so and if I hear of anything in basic research that might give hope I will certainly let you know, macwoozy.

[Blandmum]

I understand that autologous stem cells are now being trialed for CLL as well Tamum. dh has a bone marrow match from his db, but any imporovemnet is always welcome!

[macwoozy]

thanks tamum