I am writing to request stories that you have to share of women with a myoproliferative disease (MPD)  breastfeeding their babies.

MPD's are orphan diseases, because they are relatively rare. The two most common are Essential Thrombocythemia (ET)  and Polycythemia Vera (PV). These are malignancies of the bone marrow, resulting in an overproduction of blood cells, either red cells, white cells or platelets, or all three in the case of PV. The majority of patients with these diseases are diagnosed when they are older, but it is sometimes identified in women of childbearing age.

Common medications are Hydroxyurea (Hydrea)(HU) , Interferin Alpha (INF), and Anagralide (Agrylin) (AG).

Here is the request posted on another list.

"I am wondering if anyone has breastfed while taking HU, INF, or AG.  I just delivered my baby on 3/21 via C-section.  She is 3 months premature, as I developed pregnancy induced hypertension and had to deliver her in order for her to survive.  Lauren Kate LaRosa weighed 1 pound, 7 ounces and was 12.5 inches long.  She is currently in NICU, and will stay there until around her full term due date (June 25).  She is a fighter though and doing great!!!

I am pumping due to her being so tiny.  My platelets stayed real low during my pregnancy and delivery (225).  I was not on any medication.  I am also curious as to when my platelets may start to increase.  I am wondering what others have experienced with their platelets after delivery.

I see my hematologist tomorrow, so hopefully we will be able to get some sort of a game plan together then.  Right now, if I can't breastfeed and take any meds, I will go without.  My baby's health is more important to me, and she needs the best care that she can get.  That means giving my breast milk to her.

Thanks so much!!"

I have volunteed to collect as many stories as possible, so will you share?

Thanks

Karen Koss
Michigan, USA

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