Mds and hereditary?

[JulieMarie]

My mom just went to the conference in Chicago this week and came back stating that MDS is hereditary. Is this true? Since I’m a daughter is there anything I can do to prevent or to watch out for I just turned 28 this past Sunday and with all this medical stuff, I feel like I’m 50!

[bper]

If she has info of that nature, I would like to find out more. I find it rather strange that my Dad had MDS/AML and his mother had leukemia in the late 50’s (uncertain what type).

[bper]

I forgot to add that I live in Toledo too.

Beth

[Terri]

I always thought they said it wasn’t hereditary

[Suzanne]

I have been told that there is no evidence that it is hereditary by my center of excellence. There are different types of Leukemia and if AmL or MDS run in a family I have been told it usually means they were exposed to the same chemical like Benzine or everyone was a smoker-or some other factor was involved besides inheriting it. I have 4 children and it is one of the first things I asked. The UK site someone posted a link to has a list of things in your life style that might contribute.

[Marsha]

I would like more info as well. I have 2 children, their father had Hodgkins Disease when my son was 4 and daughter a baby they are now 23 and 19 He passed away from a heart related problem at 54. I was Dx with CMML but noone in my family has ever had it. I also was told it was not hereditary.

[Gerri S]

Whether MDS could be herediary is a question that nags at me often.My son,as an infant, had ITP,which I was told was a reaction to a virus he was exposed to.He was treated and fully recovered and is now a healthy 12 year old. My brother died of AML at the age of 39 and my Dad passed from MDS at the age of 66. I would like to believe that this is all a horrible coincidence. If anyone has any information regarding this I would be interested.

[LisainOk]

Actually from the research I have done this week I could only find info on 6 known cases of mds being in the same family. Here are a couple of links. This one is about a family with twin girls who both have mds, also the mother and the other sister have it. http://www.caringbridge.org/pa/hannah_madeline And this link talks about abnormal chromosomes as possibly being the cause in Mds. http://www.emedicine.com/ped/topic1526.htm

Blessings~Lisa

[doreen]

Lisa,
that is an interesting article. I have an abnormal chromosome with the 7th chromosome. Not sure if I understand all of that but I was diagnosed with MDS April of 2004. My mother died of Leukemia in 1979. She was sick for about a year with anemia which finally progressed to Leukemia. Since its at the same hosptial which I was diagnosed, do you think they can give me that information about her chromosomes and wonder if this is something that I should have checked out in my son who is 19? Maybe its something we really do not care to know?

[Neil]

Hi Doreen,
Docs seem to agree MDS is not hereditary, but I doubt they would claim it never happened or is impossible. The common feeling is those in the same family are exposed to the common environmental circumstances that are responsible for chromosome damage thus more than one person could have MDS.
My children all have annual CBCs just to make sure they are aware of their counts.
They might agre there could be a family predisposition to MDS. If they are exposed to a chemical that triggers the cloning of cells MDS could evolve.
There was little known about MDS in 1979. I would see if her records still exist. CBCs and BMBs could reveal quite a bit.

[LisainOk]

Doreen,
Well it could be just as Neil said…that members of the same family have been exposed to the same thing that might have triggered the mds. I honestly don’t know. I begin to question this myself because on my dad’s side his mother had aplastic anemia-they never did discover the cause before she passed, my dad had mds and transferred to leukimia and my dad’s sister had leukimia. His other two sisters both have anemia and diabetes. On my mom’s side, her grandfather and his daughter both passed from leukimia. Now my daughter has ITP and we are looking into a complete workup to see what else if anything she has and what may be causing it. I find it hard to believe that it is coincidence. There has to be some linking factor whether it be environmental or genetic. As for having your son checked, I don’t think I would worry unnecessarily. I have three other children besides the one with ITP but I don’t think I could torture myself with the whatifs. I don’t want to subject them to any of it unless a need arises.

~Lisa

~Lisa

[Suzanne]

I guess this just goes back to the fact that they really don’t know what causes MDS or AML.Hopefully some day they will discover more. In the meantime they just have some statistics re people exposed to chemo for another cancer, benzene, and smokers have a higher probability of getting these diseases.

[gemloyear]

Doesn’t the MDS Foundation usually publish a report on the conferances? I t would be interestingto see if they believe that mds is hereditary. It seems that many familys have or had member with leukemia ,lymphoma and other cancers.Has anyone noticed the high number of new patients registered on the forum,are doc’s becoming more proficient diagnosing it or has it always been this many? Ellie

[Neil]

Hi Ellie,
Don’t know if The AA&MDSIF covered it in a conference, but I found this.
” MDS can affect people of any age, gender or race anywhere in the world. In most cases the cause of myelodysplastic syndromes is unknowen (or ideopathic), but there are some instances in which the disease can be traced to a specific cause. For example, some patients will develop MDS after receiving intensive chemotherapy or radiation treatment for another disease. In addition long term or heavy exposure to the chemical benzene has been linked to an increased risk of developing myelodysplastic syndromes. Pesticides and other chemicals may also increase a persons risk. MDS is not contagious and with very rare exceptions is not inherited.
The incidence of myelodysplastic syndromes in the U. S. is estimated from 10,000 to 20,000 annually, based on European studies. This is equivalent to 40 to 80 cases per million population per year, or one person out of approximately 12,000 to 25,000. These estimates are not precise, however, because MDS is not a reportable disease- that is the Centers for Disease Control and Prevention (CDC) do not require that cases are reported to them. AA&MDSIF maintains a voluntary registry, the only one in the world. MDS can strike anyone at any age, even children. However, it is most frequently diagnosed in people 50 – 80 years old. In recent years though, there has been an increase in the number of cases for younger people. The development of the diagnostic criteria for MDS is relatively recent, so that MDS, as a diagnosis is increasing. MDS is considered to be somewhat more common in men than in women,”
Think the piece may answer your questions/thoughts

[Suzanne]

the # of people on the forum seems to fluxuate. I don’t see an abnormal increase. Yes they are getting better at diagnosing MDS but it still effects a relatively small # of people compared to other cancers. The amount of cancer in our society as a whole is enough so that I think they are constantly looking a for “environmental” causes in our life style that now has exposure to so many more polutants then our ancestors had. There is also the fact that many of our ancestors were dead before the age we are when we are most likely to be effected by these diseases-Just my thoughts.

[Author]

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