where to donate for polycythemia vera research

As a Polycythemia Vera patient, you can not give blood to the Red Cross. You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy.” You will need to check with the respective blood center in your area.

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Where to go for therapeutic phlebotomy for polycythemia vera?

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Can polycythemia vera patients give blood to the Red Cross?

Background: It has been suggested that blood donors could have an increased risk of polycythemia vera (PV). However, no study has assessed whether frequent donors have a higher PV risk than less frequent donors. Study design and methods: From the Scandinavian Donations and Transfusions (SCANDAT2) database, we established a cohort of blood donors who had …

How do doctors treat polycythemia vera?

The MPN Research Foundation has a single goal: to stimulate original research in pursuit of new treatments — and eventually a cure — for polycythemia vera,essential thrombocythemia and myelofibrosis, known collectively as myeloproliferative neoplasms (MPNs). MPN Research Foundation is a 501(c)3 Nonprofit with tax ID number 36-4330967.

Where can I donate blood to a PV patient?

As a Polycythemia Vera patient, you can not give blood to the Red Cross. You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy.” You will need to check with the respective blood center in your area. Many of the donor centers offer the service as a free community service.

How to drink water before phlebotomy?

Take a beverage like water, juice or Gatorade with you to drink during the procedure. Drink plenty of water a couple of days before your phlebotomy so you are well-hydrated. Prior to your procedure, avoid caffeinated beverages such as coffee as they are a diuretic. Eat breakfast beforehand.

How to get blood flowing before phlebotomy?

Take a friend with you. Do some exercise before your procedure to get your blood flowing. Ask if the entry area can be numbed by the technician, or administer Emla or other numbing cream (topical anesthetic) yourself a half-hour before your procedure. Here are phlebotomy tips and tricks for nurses. Don’t watch.

Can you give blood to the Red Cross for phlebotomy?

Where to go for Therapeutic Phlebotomy. As a Polycythemia Vera patient, you can not give blood to the Red Cross. You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy.”. You will need to check with the respective blood center in your area.

Can you poke multiple sticks with phlebotomy?

Their phlebotomy technicians were outstanding, never requiring to poke me with multiple sticks. This may be a beneficial option for some folks, although you do loose the detail provided by a CBC. I usually made sure to visit the doctor’s office and get a CBC before going to the community blood center.

What is the NORD guide for polycythemia vera?

The NORD Physician Guide for Polycythemia vera was developed as a free service of the National Organization for Rare Disorders (NORD) and it's medical advisors. The guides provide a resource for clinicians about specific rare disorders to facilitate diagnosis and treatment of their patients with this condition.

How to reduce blood thickening in polycythemia vera?

[5] . A person with polycythemia vera may also be told to take low-dose aspirin daily, which has been shown to help reduce blood thickening.

What is the condition where blood clots are made?

Polycythemia vera is a condition characterized by an increased number of red blood cells in the bloodstream (erythrocytosis). Affected people may also have excess white blood cells and platelets. Conditions where the body makes too many of these cells are known as myeloproliferative neoplasms. [1] These extra cells cause the blood to be thicker than normal, increasing the risk for blood clots that can block blood flow in arteries and veins. If a blood clot occurs in the veins deep in the arms and the legs, it is known as deep vein thrombosis (DVT). A DVT can sometimes travel through the blood stream to the lungs, which can cause a pulmonary embolism and is very dangerous. A blood clot could also travel to the heart or brain, which leads to an increased risk for heart attack or stroke.

Why is polycythemia vera bad?

This can cause problems because the blood is thicker than it would normally be , which causes an increased risk for blood clots that can cause serious health problems such as heart attack or stroke.

Why do people with PV have high red blood cells?

Because people with PV have consistently high number of red blood cells, the body tries to control this problem by secreting low levels of erythropoietin. [4] If low levels of erythropoietin are found in the blood as well as mutations in either JAK2 or TET2, an individual can be diagnosed with polycythemia vera.

What is the Orphanet database?

Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge. PubMed is a searchable database of medical literature and lists journal articles that discuss Polycythemia vera. Click on the link to view a sample search on this topic.

What hormone is released by the kidneys to help control the production of red blood cells?

Erythropoietin is a hormone that is released by the kidneys and helps control the creation of red blood cells. When the body senses that red blood cell levels are too high, as they are in people who have PV, the body secretes less erythropoietin in an effort to reduce the number of red blood cells.

How many people are affected by polycythemia vera?

Affected Populations. Polycythemia vera affects slightly more men than women. The disorder is estimated to affect approximately 44 to 57 per 100,000 people in the US. It occurs most often in individuals more than 60 years old, but can affect individuals of any age. It is extremely rare in individuals under 20.

When was polycythemia vera first reported?

Polycythemia vera was first reported in the medical literature in 1892. The term “myeloproliferative disorder” (MPD) was first used to described polycythemia vera and related disorders in 1951. In 2008, the World Health Organization reclassified MPDs to “myeloproliferative neoplasms” (MPNs) to reflect the consensus that these diseases are blood ...

What percentage of polycythemia vera is mutation?

More than 90 percent of individuals with polycythemia vera have a variation (mutation) in the JAK2 gene. The exact role that this variation plays in the development of polycythemia vera is not yet known. Introduction. Polycythemia vera was first reported in the medical literature in 1892.

What is polycythemia vera?

General Discussion. Summary. Polycythemia vera is a rare, chronic disorder involving the overproduction of blood cells in the bone marrow (myeloproliferation). The overproduction of red blood cells is most dramatic, but the production of white blood cells and platelets are also elevated in most cases. Since red blood cells are overproduced in the ...

What are the three main blood cells?

This group of disorders is characterized by the overproduction (proliferation) of one or more of the three main blood cell lines – red or white blood cells or platelets. Red blood cells carry oxygen to the body. White blood cells fight infection. Platelets are involved in clotting of the blood in response to injury.

When was Jakafi approved?

Jakafi (ruxolitinib) was approved by the FDA in 2011 for treatment of patients with intermediate or high risk myelofibrosis, including post-polycythemia vera myelofibrosis. In 2014, Jakafi was approved for PV patients who have had an inadequate response to or are intolerant of hydroxyurea.

What are the symptoms of a blood clot?

Specific symptoms depend upon where a blood clot forms. A blood clot can cause a stroke, chest pain (angina), a heart attack, deep vein thrombosis (DVT) or a pulmonary embolism. DVT occurs when a blood clot forms in the legs may cause the legs to become painful and swollen.

What is the difference between ET and PV?

The aim of this research is to look at two conditions, Essential Thrombocythemia (ET) and Polycythemia Vera (PV). ET causes people to produce too many blood cells called platelets and PV causes too many platelets and red blood cells to be made.

What is the purpose of toenail clippings?

Toenail clippings will provide normal material like DNA for comparison with the abnormal material derived from the blood and/or bone marrow.

What is the condition where blood cells are increased?

Polycythemia vera is a rare blood disorder in which there is an increase in all blood cells, particularly red blood cells. The increase in blood cells makes your blood thicker. This can lead to strokes or tissue and organ damage.

Is there a cure for polycythemia vera?

There is no cure for polycythemia vera, but proper treatment can help to reduce or delay any problems. Work with your healthcare provider to create a treatment plan that fits your needs. You should also be physically active in order to increase your heart rate and improve your blood flow.

Can polycythemia vera cause a heart attack?

Polycythemia vera can be fatal if not diagnosed and treated. It can cause blood clots resulting in a heart attack, stroke, or pulmonary embolism. Liver and spleen enlargement are other possible complications.

What are the symptoms of a swollen nose?

Symptoms include lack of energy (fatigue) or weakness, headaches, dizziness, shortness of breath, visual disturbances, nose bleeds , bleeding gums, heavy menstrual periods, and bruising. Treatment may include medicines and phlebotomy, a procedure that removes extra blood from your body.