Disease presentation
| Initial features at presentation∗ . | Number (%) . |
|---|---|
| Anemia | 358 (72.5) |
| Fatigue | 316 (64.0) |
| Hemoglobinuria | 225 (45.5) |
| Breathlessness | 114 (23.1) |
| Abdominal pain | 92 (18.6) |
| Dysphagia | 36 (7.3) |
| Erectile dysfunction | 32 (13.5)† |
| Initial referral to nonhematology/oncology specialties‡ | |
| Urology | 30 (6.1) |
| Gastroenterology | 29 (5.9) |
| Renal | 3 (0.6) |
| Cardiology | 3 (0.6) |
| Internal medicine | 2 (0.4) |
| Neurology | 2 (0.4) |
| Rheumatology | 2 (0.4) |
| Endocrinology | 1 (0.2) |
| Hepatology | 1 (0.2) |
| General surgery | 1 (0.2) |
| Vascular surgery | 1 (0.2) |
| Ear nose and throat surgery | 1 (0.2) |
| Eating disorder clinic | 1 (0.2) |
| Chronic fatigue clinic | 1 (0.2) |
| Misdiagnoses§ | |
| Genito-urinary bleeding | 17 |
| Iron deficiency anemia with cause unknown | 15 |
| Immune thrombocytopenic purpura | 10 |
| Warm autoimmune hemolytic anemia | 6 |
| Myelodysplastic syndrome | 4 |
| Vitamin B12 deficiency | 3 |
| Crohn disease | 2 |
| Adult Still disease | 1 |
| Idiopathic liver failure | 1 |
| Renal failure | 1 |
| Pyruvate kinase deficiency | 1 |
| Hereditary spherocytosis | 1 |
| Pancreatitis | 1 |
| Gallstones | 1 |
| Myalgic encephalomyelitis | 1 |
| Diverticular disease | 1 |
| Initial features at presentation∗ . | Number (%) . |
|---|---|
| Anemia | 358 (72.5) |
| Fatigue | 316 (64.0) |
| Hemoglobinuria | 225 (45.5) |
| Breathlessness | 114 (23.1) |
| Abdominal pain | 92 (18.6) |
| Dysphagia | 36 (7.3) |
| Erectile dysfunction | 32 (13.5)† |
| Initial referral to nonhematology/oncology specialties‡ | |
| Urology | 30 (6.1) |
| Gastroenterology | 29 (5.9) |
| Renal | 3 (0.6) |
| Cardiology | 3 (0.6) |
| Internal medicine | 2 (0.4) |
| Neurology | 2 (0.4) |
| Rheumatology | 2 (0.4) |
| Endocrinology | 1 (0.2) |
| Hepatology | 1 (0.2) |
| General surgery | 1 (0.2) |
| Vascular surgery | 1 (0.2) |
| Ear nose and throat surgery | 1 (0.2) |
| Eating disorder clinic | 1 (0.2) |
| Chronic fatigue clinic | 1 (0.2) |
| Misdiagnoses§ | |
| Genito-urinary bleeding | 17 |
| Iron deficiency anemia with cause unknown | 15 |
| Immune thrombocytopenic purpura | 10 |
| Warm autoimmune hemolytic anemia | 6 |
| Myelodysplastic syndrome | 4 |
| Vitamin B12 deficiency | 3 |
| Crohn disease | 2 |
| Adult Still disease | 1 |
| Idiopathic liver failure | 1 |
| Renal failure | 1 |
| Pyruvate kinase deficiency | 1 |
| Hereditary spherocytosis | 1 |
| Pancreatitis | 1 |
| Gallstones | 1 |
| Myalgic encephalomyelitis | 1 |
| Diverticular disease | 1 |