MPN Voice
3,194 members4,840 posts

Newcastle Forum Friday 15th March. Feed back

This was first forum, i did know what to exspect, in my head i was looking for answers!

I recieved a letter saying that the speaker was Mary Frances McMullen from Belfast. (she was not there). But i must say the haemotologist speakers done a good job in letting most of us know what we already know by finding out on web site or support groups.

I was looking for- an update on how the research was getting on to find out where or how did we get E.T, is it in the family or will our children have a blood disorder?

It was good that people had a chance to speak this was very interesting but hard as the time was limited, i believe there should have been time for people to talk about themselves if they wished too.

The presentation was good if you could see it or read it, it would have been a good idea if there was a copy given so it was easier to follow.

I would like to say thank you to Maz, who did an excellent speach, well done! i am glad i got to speak to Maz at the end as she answered my question, does it run in the family? how did we get it?, (reply- hopefuly we will find out within 2 years).

Would i go to another forum? Maybe, if the speaker were someone i don't know.

To me - i was looking for more.

1 Reply

Hi Wendy, sorry you got the wrong information on a letter, Prof McMullen attended the forum last year, I don't know why the letter said she would be there this year. At the forums we hold in London we always have break-out groups for each MPD so you get the chance to talk to others in a small group, it's a good way to get to know more about your MPD and how other people cope, each group also has either a haematologist or a haematology nurse there to answer medical questions, not all forums follow the same format, so if you can get to London I am sure you will find the break-out groups to be of help. I'm glad I was able to talk to you and answer your question and that you enjoyed my talk. Maz.


You may also like...