MDS is a rare disease. In Ireland, 147 people were diagnosed with it in 2010. It can be diagnosed at any age but is more common as people get older. MDS is very rare in children and uncommon in young adults. Children with MDS will generally be cared for by a children’s specialist (paediatric haematologist). This booklet deals with the adult disease only.
What causes MDS?
The cause of MDS is largely unknown. However, there are certain things called risk factors that can increase your chance of developing the disease. These include:
- Age: The average age to develop MDS is about 70 years. About 9 out of 10 people are over the age of 50 at the time of diagnosis.
- Gender: Men are slightly more likely than women to be diagnosed with MDS.
- Previous chemotherapy or radiotherapy: About 1 in 10 patients with MDS will have received chemotherapy or radiotherapy for the treatment of other diseases in the past. This is often a long time before MDS happens. Damage to your bone marrow from these treatments is sometimes believed to have caused the MDS. This is often called secondary MDS or therapy-related MDS.
- Smoking: Smoking might be linked to MDS. Also, the risk of developing AML is greater for smokers than for non-smokers.
- Environmental factors: Exposure to high levels of certain chemicals, particularly benzene, and radiation are both considered possible causes of MDS.
- Inherited disorders: In rare cases, MDS can be inherited or occurs because a rare blood disorder has been inherited. For example, Fanconi anaemia. This can make you more likely to get MDS. If you are a young person diagnosed with MDS, your doctor may test to see if you have any inherited conditions.
Remember MDS is not infectious and cannot be passed on to other people.
What are the signs and symptoms of MDS?
Many MDS patients have no signs or symptoms and are diagnosed by chance after a routine blood test. If you do have symptoms, they can often vary from person to person and depend on which blood cells are affected. Most symptoms arise because the blood counts are low. About 8 out of 10 patients have anaemia, while about 2 in 10 have infections or bleeding. MDS symptoms include:
- Tiredness and fatigue
- Shortness of breath
- Bleeding, often from the mouth or nose
- Bruising or skin rash
Infections can occur anywhere in your body and are usually caused by bacteria or fungi.