Fatigue, uncertainty and reduced activity lead to isolation, anxiety and emotional distress. 39% required regular support from caregivers, with companionship and emotional support reported by 83% of those receiving help. There is a hidden emotional burden of living with MDS.

Unintentional weight loss can occur gradually and may reflect the body’s increased demands from chronic disease. 20% of patients reported weight loss, while caregivers identified weight loss as one of the symptoms with the most severe impact on patients’ quality of life.

Although bruises may occasionally be visible, the underlying risk of bleeding is often hidden and can cause significant anxiety. 22% of patients reported easy or unusual bruising or bleeding related to their condition or treatment. #WorldMDSAwarenessDay #ThinkMDS

Patients may experience balance problems, dizziness or feeling faint, affecting confidence and safety. 28% of patients reported dizziness or light-headedness, a symptom often associated with low blood counts and anaemia. #WorldMDSAwarenessDay #ThinkMDS #InvisibleSymptoms

MDS can weaken the immune system, increasing susceptibility to infections that may not be obvious to others. 13% of patients reported frequent infections, reflecting the underlying bone marrow dysfunction associated with MDS. #WorldMDSAwarenessDay #ThinkMDS #InvisibleSymptoms

Anaemia causes profound exhaustion, dizziness and reduced physical capacity, even though patients may appear well externally. 33% of patients reported anaemia-related symptoms. Caregivers also ranked anaemia among the symptoms having the most severe impact on patients’ lives.

Muscle weakness can limit mobility, reduce stamina and make everyday tasks exhausting. 28% of patients reported muscle weakness as an ongoing symptom impacting their wellbeing and independence. #WorldMDSAwarenessDay #WorldMDSAwarenessDay2026 #ThinkMDS #InvisibleSymptoms

Pain in joints and bones may not be visible but can make movement difficult and reduce quality of life. 34% of patients experienced joint or bone pain. Among younger patients aged 30-45 years, it was 51%, highlighting a significant hidden impact on daily functioning. #ThinkMDS

Many people with MDS experience breathlessness even during routine tasks such as walking, climbing stairs or household activities. 31% of patients reported shortness of breath or trouble breathing. This symptom is often linked to low red blood cell counts and anaemia. #ThinkMDS

October 25 is World MDS Awareness Day. Throughout the day we will be sharing invisible symptoms of MDS to raise awareness about the impacts of MDS on patients and families. AAMAC is proud to support patients & families impacted by MDS during diagnosis, treatment, and recovery.

🩸 Have questions about the safety of Canada’s blood system? AAMAC and Thalassemia Foundation of Canada, with support from Canadian Blood Services, are hosting a webinar this fall focused on blood safety for the patient community. Register at: us06web.zoom.us/webinar/regi…

AAMAC's IN-PERSON Education Conference in Saskatoon is fast approaching! On Sat, Nov 21, hear presentations from experts on bone marrow failure For more details and to register please visit our website aamac.ca/events/saskatoon-pa… or contact us directly at [email protected]

A gentle reminder that AAMAC's Fall 2026 newsletter is out now! The online version is available on our website at aamac.ca/wp-content/uploads/… To switch from physical mailing or if your address has changed, please contact us at [email protected] to update your preferences.

SAVE THE DATE for AAMAC's IN-PERSON Education Conference in Saskatoon! On Sat, Nov 21, we will have the privilege to hear presentations from experts in the field of bone marrow failure disorders. Register on our website aamac.ca/events/saskatoon-pa… or email us at [email protected]

AAMAC's upcoming webinar will explore blood safety: 🩸What is blood, and what are its different components? 🔬What happens to donated blood after it's collected? 🛡️ What safeguards are in place to help ensure a safe blood system? Register: us06web.zoom.us/webinar/regi…

Research Participation Opportunity! Are you a caregiver living in Hamilton, Ontario? The research team at McMaster University is looking for participants! 📣 Interested in participating? Contact Reemal Shahbaz at [email protected] or (416) 219-3312.

AAMAC's Monday Support Group meets next Monday, October 19, at 6 PM (PT), which is 7 PM (MT), 9 PM (ET) or 10 PM (AT). Please register on our website at aamac.ca/events/online-suppo… or email us at [email protected] #PatientSupport #MDS #AplasticAnemia #PNH #Myelodysplasia

🍂 Wishing everyone a wonderful Thanksgiving long weekend filled with gratitude, warmth, and special moments with family and friends. AAMAC wishes you an enjoyable and relaxing holiday! #HappyThanksgiving #Gratitude #LongWeekend #Thanksgiving2026 #HappyThanksgiving2026

AAMAC's Wednesday Support Group meets next Wednesday, October 14, at 3 PM (PT), which is 4 PM (MT), 6 PM (ET) or 7 PM (AT). Please register on our website at aamac.ca/events/online-suppo… or email us at [email protected] #PatientSupport #MDS #AplasticAnemia #PNH #Myelodysplasia

AAMAC's Annual General Meeting will take place virtually on Saturday, October 17 at 1 PM (Eastern Time). If you are interested in participating please let us know at [email protected] or sign up through our website aamac.ca/events/annual-gener… to receive the login information.