How common is MDS

[Honeybun]

Hello all

I was wondering how common MDS is. I was informed the other day by a work colleague that there was another couple of people in our Company with MDS. Different types I am sure, however we are all on the younger side of someone that would have MDS. I can't seem to find a common denominator that would link us all, as we do not work at a pesticide plant for example, where perhaps the environment may have been a factor. We are a large company perhaps it is just odds, but still we are all young (in MDS terms).

Thanks

Honey

[Caregive]

I have a feeling some of these rare diseases are not so rare. I asked where my husband is treated and was told they have about 100 people. I sorta doubt that number but at least that means many more than I figured. So I asked why they don't have a support group. I was given a phone number to call one of their staff about that. My husband would really like to talk to others with MDS. So let's see who else responds here with ideas on how many have this illness.

[Neil Cuadra]

About 1 in 4000 Americans has MDS.

You can arrange to talk to another MDS patient through the Peer Support Network of the Aplastic Anemia & MDS International Foundation. Just call a patient educator at 800-747-2820, option 1, and ask about contacting an MDS patient or caregiver.

[Chirley]

Honey, I don't know if you heard about it because this happened in Brisbane. At the ABC radio studio in Toowong there was a spate of people with breast cancer and not just women! It seemed like they were announcing a new victim every second week. They did all kinds of testing to find a cause but they never did. It was determined to be a cluster of unknown cause. It was decided to demolish the building!

Sometimes they just can't find answers. When I worked in a laboratory many years ago I noticed that a lot of the workers and or their spouses got cancer. It was tragic really, Haematologists whose wives died from leukaemia...things like that. Cancer seemed very prevalent in the histo lab where, ironically, they tested specimens for cancer. In that case I'm almost sure it was the preserving solutions, formaldehyde etc. they used to work in negative air pressure chambers etc but it didn't seem to be effective.

When I first became sick I lived in a neighbourhood where there were a lot of people with undiagnosed illnesses or cancer. Both my immediate neighbours got cancer (one died), the lady over the road got cancer, the young man next to her had undiagnosed severe anaemia and the man three doors down on my side of the road died from leukaemia. The scary part about that cluster was that my house was five houses away from a Primary School. I would never, ever have sent a child to that school. We were very close to a major toll road that carried a lot of freight trucks...I don't know if that was significant but I breathed a sigh of relief when I sold that house and moved on.

One day, they will find a cause.