Finding the Right Doctor for Rare Blood Disorders

By

Marijke Vroomen Durning, RN

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Your blood is a complex part of your body’s circulatory system. It distributes oxygen and nutrients to your body’s tissues and then flushes away waste, repeating this cycle about 100,000 times a day. Blood contains red blood cells, white blood cells, platelets, and other substances, each playing an essential role in your health.

Unfortunately, because there are so many components to blood and how it’s produced, many things can go wrong, resulting in a number of possible blood disorders and diseases.

Some disorders are fairly common, such as anemia, and others aren’t quite as common but they aren’t rare either, such as leukemia and hemophilia. In general, most blood disorders are treated and managed by hematologists (blood specialists) and oncologists (blood cancer specialists), but some blood disorders, such as polycythemia vera and myelofibrosis, are quite rare and not all hematologists may be as familiar with treating them as others.

When You Are Diagnosed

If you’ve just been diagnosed with a rare blood disorder, you may not yet have seen a hematologist. If this is the case, your primary care physician (PCP) will refer you to one. You can ask your PCP for recommendations for hematologists or hematologic oncologists who have experience with your blood disorder. If you would rather find a specialist on your own or you’d like a second opinion, here are some suggestions for finding someone:

Look at Academic Centers

Hospitals associated with medical schools are usually at the forefront of medical care. Because the centers are educating new generations of doctors and specialists, they have to stay up-to-date on the latest research, and the often have access to the newest technology and investigational therapies. This is an advantage for people living with rarer illnesses and conditions.

Reach Out to Patient Support Groups

Patient support groups can be a rich source of information for people who are newly diagnosed with a rare blood disorder. If you can find such a group in your area, the members may have specific resources to share, such as a list of specialists who are familiar with treating your disorder.

Healthgrades.com

If you’re doing online research for a hematologist, you can use the extensive Healthgrades database that lists specialists and hospitals. Type in your location and the specialty you’re looking for. The system allows people to leave ratings and comments about their experiences with the doctors, giving you the opportunity to compare and find the specialist who you believe is the best fit for you and your needs.

Research Through Professional Organizations

The American Society of Hematologists is a professional organization of clinicians (doctors who work directly with patients) and researchers, all who are interested in the field of blood disorders. Their website has its own database where members of the public can search for a hematologist in a preferred location and with specific interests.  You can narrow down your search even more by asking for hematologists who will give second opinions or those who will review cases.

Now That You Have a Specialist: What to Ask?

When you first meet with your new hematologist or hematology oncologist, it may seem overwhelming - there is so much new information you need to have. It’s best if you can prepare for your meeting ahead of time by having a list of questions to ask. Here are some suggestions that will help get the conversation going:

  • How familiar are you with my rare blood disorder?

  • How many patients have you treated who have this disorder?

  • Do you have relationships with other specialists who work with this disorder, either individually or as part of a research or clinical group?

  • What treatment plan to you foresee?

  • What is the goal of the treatment?

  • Are there any other treatment options?

  • Are you participating in any clinical trials for my condition?

  • Are there other patients or a support group I can contact for support?

Living with illness has challenges, but if you have a rare blood disorder, there are additional ones. Looking for a specialist who understands your illness and its treatment is the first step in helping you manage your illness.

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Medical Reviewers: William C. Lloyd III, MD, FACS Last Review Date: Jun 27, 2016

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Medical References

  1. Polycythemia Vera. National Organization of Rare Disorders. http://rarediseases.org/rare-diseases/polycythemia-vera/
  2. Taking with your doctor. American Society of Hematology. http://www.hematology.org/Patients/Your-Doctor.aspx
  3. About the Cardiovascular System. TeensHealth. http://kidshealth.org/en/teens/heart.html