First Questions

after an MDS diagnosis

Here are some of the questions, which popup just after you have been told by your physician and/or hematologist, that you have MDS. What will life be like with a chronic disease? Should I take the change of being cure by a bone marrow transplant?

The answers to these questions are not universal, but depends on the individual. However, reading some of the articles listes below may help you find your answers to these big questions. You may also want to view the three videos linked to on the page Living with MDS.

What is Myelodysplastic Syndromes (MDS)?

Myelosdysplastic Syndromes (MDS) is a group of diseases, which affects the bone marrows ability to produce the basic constituents of blood: red blood cells, white blood cells and platelets.

What causes MDS?

The exact causes of MDS are not clear.

How do you know if you have MDS?

A typical first symptom of MDS is shortness of breath, but there are many others. Hence you cannot know for sure until your physician have ordered a bone marrow biopsy including a chromosome analysis. She usually does this after a blood test have shown low blood counts.

How can MDS be treated?

The only treatment, which cures MDS is a bone marrow transplant. All other treatments is supportive in nature, i.e. treatments aimed at improving quality of life for the patient. In some areas doctors have come together an created treatment protocols. That is the case in the Nordic countries, where the Nordic MDS Group have created such a protocol. Read more...

A bone marrow transplant is a very serious treatment, which requires careful consideration from both the doctor and the patient. Many MDS patients will never need a bone marrow transplant.

The doctor said you have MDS - What then?

After many test, and many visit to different physicians, you sit in the doctors office, and he tells you, that you have MDS. Read more...