4 Mistakes People Make With Rare Blood Diseases

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Our body produces three types of blood cells- red blood cells, white blood cells, and platelets. Most of the time, our body does a great job regulating the number of blood cells it makes to meet our needs. However. in some cases, too many, too few, or abnormally-shaped cells are created, resulting in the development of a blood disease or blood cancer.

While some blood cancers, like leukemia, are more common, there are also a number of rare blood diseases, such as polycythemia vera and myelofibrosis. If you are someone who has been diagnosed with a rare blood disease, there may be a bit of a learning curve as you figure out how to manage your life with this diagnosis. To help you out, let’s take a look at some mistakes that are often made, so you can see how to avoid them.  

Mistake #1: Not Asking Questions

You probably received a lot of information in a short amount of time when you were first diagnosed. It’s important you understand all of it! Don’t be afraid to ask your doctor to clarify things that are confusing or to repeat things you forgot.

Often, you may think of questions while you are at home, but in the bustle of a doctor’s appointment, you forget to bring them up. To fix this, try to keep a running list of questions and bring it with you when you go to see your doctor. Make sure you have covered everything on your list before you leave.

Mistake #2: Not Tracking Your Symptoms

Most rare blood diseases can present with a long and varying list of symptoms. Not only should you be aware of these, but you should document how often they occur and their severity. This will help your doctor determine if your treatment is working effectively.

Pay attention to everything- even symptoms that may not have raised red flags for you in the past. For example, while you may be tempted to disregard a headache as a common occurrence, it could actually be caused by the decreased blood circulation associated with polycythemia vera. Or for someone with idiopathic thrombocytopenia, a heavier menstrual flow could be a sign of a dropping platelet count.

Mistake #3: Keeping Your Lifestyle the Same

While most blood diseases can be treated with different medical interventions, you may also need to modify your lifestyle a bit. Good nutrition and proper hydration are very important. Alcohol may need to be limited or eliminated completely. If you are a smoker, you should quit.

Safety is a big concern. For diseases like myelofibrosis, if spleen enlargement occurs, contact sports will need to be avoided due to the risk of the spleen rupturing. Patients with low platelets should use electric razors and be extremely careful when using a knife at home. Ask your doctor if there are things you should do or change to help with your disease self-management.

Mistake #4: Taking Over-the-Counter (OTC) Medications Without Talking to Your Doctor

Check with your doctor before taking any over the counter medications. If you have a blood disease that puts you at a higher risk of bleeding, you probably know you should avoid aspirin. However, do you know that some cough and cold medicines have aspirin in them? This is just one example of how you could put yourself into a dangerous situation by taking a medication you may think is “safe”.

The same applies to herbal supplements. Even these natural remedies can have interactions with other medication or impact your disease course. Let your doctor know about any supplements you take.

Receiving a diagnosis of a rare blood disorder can be scary, but it doesn’t have to mean you can’t still live a full and productive life. The more you educate yourself on the disease, the better choices you can make to keep your disease properly managed. Don’t forget that your medical team is always there to support you every step of the way.

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Medical Reviewer: William C. Lloyd III, MD, FACS
Last Review Date: 2018 Nov 7
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