Treatment and Support

You Are Not Alone

Unique challenges come with having a rare or uncommon disease.

Our volunteers can help guide you:

• through the maze of unfamiliar terminology,
• keep you abreast of the latest treatment options,
• and help you adapt to the chronic health concerns and lifestyle changes and challenges that can follow diagnosis.

If you or someone you know has aplastic anemia, MDS or PNH, contact us. Volunteers with personal experience with these diseases can provide valuable guidance and support.

We also rely on our Medical and Scientific Advisory Committee made up of Canadian experts in the diseases and may be able to refer you to helpful resources though a network of organizations developed over more than 20 years.

Contact us for free:

• telephone and e-mail peer-to-peer support
• educational material
• our quarterly newsletter
• support group meetings
• educational conferences

All volunteers are asked to respect your privacy. You can share as much or as little as you like.

How Are Aplastic Anemia, MDS and PNH Treated?

There is no "one size fits all" answer when it comes to treatment. Each person's unique situation must be considered.

Treatment depends on factors such as the patient's age, the severity of the disease, and the availability of a matching bone marrow donor.

People dealing with one of these bone marrow failure diseases should seek out the professional advice of a specialist such as a hematologist or oncologist, particularly one with experience treating these rare disorders.

Bone marrow transplantation

One cure for these diseases is a bone marrow transplant. In a transplant, the patient's own defective marrow is destroyed and replaced with healthy cells from either a related or unrelated donor. A transplant is a significant undertaking and is not an option for those without a matching donor. Also, in some cases a person's health or age may preclude them from undergoing the transplant.

Blood Transfusions and Marrow Stimulating Drug Therapies

Inadequate blood production can be supplemented temporarily with blood transfusions or marrow stimulating drug therapies. For information, ask us for a free booklet about transfusions.

While transfusions may temporarily manage symptoms and improve quality of life, they are not without their own risks. Patients may develop antibodies or experience allergic reactions to the blood. Repeated transfusions can also cause a condition called iron overload because of the iron in the donor blood. This must be treated using iron chelation to ensure internal organs are not damaged from the excess iron build-up.

Antibiotics

Infection may also be a great danger to those patients whose marrow is failing to produce adequate white blood cells. Broad-spectrum antibiotics are often used liberally in such patients.

Other Medications

Drugs that suppress the body's immune system may be helpful for some patients.

The important thing for a patient diagnosed with bone marrow failure disease to know is that there is a great deal of research being conducted in this area and that there are promising new and improved treatment options being developed for the diseases.

AAMAC supports research to better understand bone marrow failure diseases, to increase the treatment options available and ultimately to find a cure. We also advocate for new treatments to be brought to Canada and to have new treatments funded by provincial governments.

Alternative Therapies

Always consult your hematologist or oncologist and coordinate with them before taking any alternative therapies.

Clinical Trials

For information about clinical trials, click here. Click here for some helpful sites with useful information.