I am new

[annette smethers]

I have the familial form mds..three of my children now 37 yrs, 40 yrs, and 45 yrs, old and two of my grandsons have it also 13 yrs and 17 yrs, old. I am 64 yrs old come November.

There is no treatment at all but that nothing seems to be our survival. God and Mental toughness prevail in my family.

Well I am here lost and nevervous I have never did a message board before but after reading some of your post just had to say God Bless to you.

[sarah]

Welcome to the forum Annette. Hope you find support and information that can benefit you. Never heard of so many in one family dx’d with this. I know well about the mental toughness and prayer. One day at a time. God Bless you as well.

[Bkwits]

Hi Annette,

Welcome! Don’t be nervous, you are doing very well at posting. I have never heard of familial form MDS. I was under the impression that MDS was not an inheritable disease. In fact, my stepdaughter was concerned about that. Please let us know how you are doing. My best to you and your family.
Barb

[annette smethers]

Hello Bard and Sarah..I had to step out for a minute was surprized to hear from you..Me and my family have the rarest type only 6 known familys with it to my last knowledge of the number thing. Under what causes mds on the Foundations homepage click then scroll to ‘Is There an Inherited Tendency to Develop MDS?’ It will answer your questions…believe you my family rarely gets that much on any mds site. ASK questions of your Doctors so very often they do not look for my type till an accident or some strange thing strange happens to another family member to put a halt on things to test others in the family..

[annette smethers]

My four children by the way are all sons one son does not have it my granddaughters do not have it. I was dx with mds at 29 yrs. old. (I like dx short cut you use)

[Suzanne]

Annette, My hat is off to you. Most of us have trouble coping with one person in the family with this disease. It does look from your post as if you & family members have been able to “live with ” the disease for a significant length of time. Are you classified in any other way then “familial”-like RA, RARS, RAEB? CMML-or is familial a classification of its own. What kind of treatments have you and family members had? Are you all or some transfusion dependent?

[annette smethers]

Thank you suzanne.. we have no treatments at all.
Just live our lives as if nothing is wrong..cautioned about head injuries and avoid any surgeries that can be lived without. For an unknown reason my platlets went from the 20,000 t0 35,000 range several years ago and are still stable in the 75,000 t0 104,000. My boys are 15,000 and below and my grandsons maintain a stable 60 to 65,000. unfortuly my youngest son was at 9,000 lowest record at OHSU a few years back..nothing but close monitoring could be done. We are tested 6mo. to a year unless change occurs.

[sarah]

What issues does this familial MDS have for you. Does it affect all your counts? Any blasts in marrow?

[annette smethers]

famlial thrombocytopenia some call it familial msd thats it. no other possibles attached to the name..my wht count is 17 but stable and i am no longer anemic..they don’t why other than it is.

God Bless, your treatment is rougher than my non-treatment. Somehow it don’t seem fair what you guys go through and me and my family have gone years beyond the expectations of all studies without any treatment. We have had our share of miricles but haven’t had to deal with side effects of treatments..Stay the course

[annette smethers]

sarah I had to look at my bone morrow biopsy ..by the way my biopsy is same for all of us in my family.. so the grandkids do not have to go through that,it says no excess blasts or plasma cells are identified. also states eventhough this has not been associated with any malignancy, its identification is consistent with the presence of a neoplastic clone.

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