Elsa was diagnosed with Myelodysplastic Syndrome (MDS) after being treated for thrombocythaemia, a condition that has caused her strokes. Her MDS was treated with blood transfusions, EPO and G-CSF injections and cyclosporin. She is in remission.
Before being diagnosed with myelodysplastic syndrome (MDS) in 2004, Elsa had been living with a myeloproliferative disorder called essential thrombocythaemia for ten years, the treatment for which can increase the risk of developing MDS or leukaemia.
In 1994 Elsa had frequent menstrual bleeding and one day she collapsed. A laparotomy showed no gynaecological abnormality but blood tests identified essential thrombocythaemia. She was started on hydroxyurea chemotherapy tablets. The next year she had an eye operation after developing glaucoma, iritis and a cataract. After moving from Scotland to England her new haematologist insisted on a hysterectomy, which she reluctantly had and felt a lot better.
In 1999 she had a stroke due to the thrombocythaemia. She was paralysed on one side and had to learn to walk again. In 2003 she had recurrent infections and asthma and was given immunoglobulin treatment, to which she had an allergic reaction. After another stroke she was treated with radioactive phosphorus, which reduced her platelet count and she had to learn to walk a second time.
In 2004 Elsa’s gums started bleeding heavily. A neighbour took her to A&E where they tried to take blood from her but her veins collapsed and purple spots appeared all over her body. She was isolated and given a platelet transfusion. She was told she had MDS and would be transferred to a hospital in London for treatment. She didn’t realise at the time that her condition was life threatening. She was treated in hospital for two weeks then treated thereafter as an outpatient, although she was repeatedly admitted because of infections. A bone marrow transplant was out of the question as her history of strokes put her at too high a risk, so for three and a half years she had regular transfusions of blood products alongside EPO and G-CSF injections. After a while her iron levels became too high and she had to have another treatment to reduce them. Her veins collapsed from over use and after having infections at the injection sites she asked if she could stop the treatment. She was then given cyclosporin, an immunosuppressant, after which she achieved remission.
Elsa has since had more strokes but each time has recovered. She is still vulnerable to infection and has days when she is very tired but tries to carry on with life as normal. She does voluntary work and lives off her savings and Disability Living Allowance.