Information and Support for MPD's

 Thank you for visiting, and please sign my guestbook while you're here so I know you visited.   

This website is for anyone who is involved with a person with a Myeloproliferative Disease, consisting of:

Polycythemia Vera --  Polycythemia vera, a disease of the hematopoietic stem cells (cells that give rise to blood cells) is characterized by the overproduction of red blood cells by the bone marrow. This overproduction can lead to thickening of the blood, which can impair the function of the heart or the brain.

Essential Thrombocythemia --  Essential thrombocythemia (also called primary thrombocythemia), a disease that results in the overproduction of platelets by the bone marrow, generally affects people over 50. (Elevated numbers of platelets can also occur as a result of infection, iron deficiency, and other secondary causes.)

Myelofibrosis --  Myelofibrosis is a disorder in which fibroblasts, cells that are found in the bone marrow, produce too much fibrous or scar tissue within the bone-marrow space. When this happens, blood-producing cells are produced in fewer numbers and can be destroyed more rapidly, resulting in anemia, low platelet count, and a tendency to develop infections. The disease, which is most common in people between the ages of 50 and 70, often produces few symptoms initially, but when anemia develops, they may include fatigue and weakness and abdominal pain from an enlarged spleen. Myelofibrosis can occur by itself or in association with myeloproliferative diseases such as essential thrombocythemia and polycythemia, or in patients with myelodysplastic syndromes or acute myeloid leukemia.

From

 Chronic Myelogenous Leukemia --Chronic myelogenous leukemia (CML) is an uncommon type of cancer of the blood cells. It's considered chronic leukemia because it usually progresses more slowly than acute leukemia, sometimes over the course of years.  ( http://www.mayoclinic.com/health/chronic-myelogenous-leukemia/DS00564)

Last Updated 18 August 2009

 I apologize for not updating this site regularly.  John is still taking Peg-Intron Interferon, but a low dose.  His platelets have been pretty stable, with only slight fluctations.  He has had four esophageal dilations due to throat cancer he had in 1996, and he has a very hard time swallowing, even now.  There isn't much improvement in his throat even with the dilations.  His weight is down to 119 pounds because of the difficulty eating and swallowing.

John recently had two biopsies of the throat and neck, and everything came back negative.  That was great news!  The source of the neck pain turned out to be a piece of the Thyroid Cartilage broke off, and was trying to work it's way out.  It wouldn't have come out because it was attached to a piece of ligament.  The surgeon at U of M did manage to remove it when he did the biopsies.  He was a wonderful doctor in my opinion.  John still might need another dilation because he's still having a hard time swallowing and eating, but he is eating.  His weight is about 121 now.

If you have a question, please ask, and I will do my best to get an answer for you, or direct you to the right place.  Feel free to leave a comment, or visit the forum. 

I'm sure there is so much new information about MPD's, but I haven't researched a lot.  I do plan on updating this website soon.  Thanks for stopping by.  I hope you found some good information here.

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The Reason

This site exists because my husband has Polycythemia Vera (PV) and Essential Thrombocythemia (ET).  We are always looking for updated information, and sometimes need support from others who are going through this, too.  That's my reason for this.  This site is still in its early stages. I have added links for you to gain information about this disease, and I'll try to give feedback only on what I already know from our own experiences and information from our doctors.  If what we are going through can help others, too, then my goal for this site has been met. 

Please feel free to contact me with any stories and information you want to share. I'll be glad to add them at your request. I also added a forum for sharing support, or just a shoulder.  There are many of us going through MPD's, but there are a lof of people who have never heard of it.  I'd like to change that.

glitter-graphics.com.

Contact Information

I recently received an email supposedly from the MPD Foundation.  They said they found some new genetic link, and at the bottom suggested donations.  BEWARE, this is not a real email from the MPD FOUNDATION.  I also received an email earlier from someone who claimed to have ET (Essential Throbocythemia) and he said that he was in the hospital, and has found a cure!  Again, BEWARE of anything your might receive that is like this.  You can check out the official website for the MPD foundation to learn of any new happenings with this disease.  So, please, be aware of how low some people will stoop to get money from people. 

glitter-graphics.com

DISCLAIMER

Most of the things I mention about Myeloproliferative Disease, and any other medical stuff is only what I have read and researched on my own, and with conversations with our doctors. In no way am I giving advice or promoting any site in particular. This is only things we are going through now as a family, and this site has no other purpose.