Emma

Emma’s husband, age 29, was diagnosed with an aggressive form of relapsing-remitting MS in 2011. Emma’s scientific background helps her to understand the illness and the available treatments. She is eager to find out more about relevant clinical trials.

Emma’s husband, aged 29, was diagnosed with an aggressive form of relapsing- remitting MS in Jan 2011 after first experiencing symptoms in October 2010. At first they thought his headache and vomiting was caused by food poisoning but even when those symptoms went away he felt strange. He was referred back to his GP from one accident and emergency department but admitted for investigations a couple of days later to the hospital near their home.

From the moment that MS was suspected Emma researched the illness on the internet. She has a degree in molecular biology and understands scientific terminology. She was determined to find out as much as she could about the illness, and the treatments which were offered, in order to help her husband make decisions about which treatment to take. They found that the potential side effects of Tysabri (an immunosuppressant) were serious and he decided to have interferon-beta1 treatment instead.

They were both devastated by the diagnosis, partly because it meant the end of her husband’s dream to become a pilot. They had invested a lot of money in his training, which he now had to give up. He still works in a part-time job and currently does not have symptoms. He has joined a gym and Emma ensures that he eats healthy food, paying particular attention to vitamin D and to Omega 3-6-9 fatty acids. She is determined that he will stay healthy enough to work, for his own benefit, as long as possible. Emma is the main income earner and is also paying special attention to her own health, having recently given up smoking.

Emma feels that, with one or two exceptions, they have received very good treatment in the NHS. A doctor suspected the probable diagnosis quickly from the story of her husband’s symptoms and they have received ongoing support from an MS nurse. Emma is very critical, though, of a GP who told her husband to go to Specsavers, when he complained of double vision, even though he had been diagnosed with MS. (They changed GP). She also feels that not enough information is available about recruitment to clinical trials.

Emma appreciates the knowledge and skill of the medical staff at the hospital but feels that she would like more frequent contact with the consultant. And she felt that for her husband to be told straight after being diagnosed that he might not be eligible for treatment in the UK because he is originally from Brazil was not very sympathetic at a human level. Emma emphasises that they have both worked all the time they have been resident in the UK and have received no financial benefits at all. She also feels that, although she is an emotionally robust person, she does have a need for psychological support which is not really beinng met.

Emma researched MS extensively on the internet. She regularly visits the websites of MS charities.

Age at interview 37

Gender Female

Emma describes her husband’s symptoms of vomiting and headache. She thought at first they were caused by food poisoning or alcohol.

Age at interview 37

Gender Female

Emma describes a short, intensive period of investigations leading up to her husband’s recent diagnosis.

Age at interview 37

Gender Female

Emma says she has always been emotionally strong. When her husband was going through tests she pretended to him that she thought everything would be ok, and only cried when she was alone or talking to her mother and sister.

Age at interview 37

Gender Female

Emma changed GP when her husband was told to go to Specsavers’ with his visual problems. The new GP referred him immediately to a neuro-ophthalmologist.

Age at interview 37

Gender Female

Emma doesn’t really feel entitled to psychological support from the professionals looking after her husband, but she thinks it’s important for her to be as well as possible so that she can support him.

Age at interview 37

Gender Female

Emma’s degree in molecular biology helped her understand all she was reading about MS. She passed on the information to her husband, to help him make decisions.

Age at interview 37

Gender Female

Emma’s husband chose to use interferon. Emma feels lucky that he has so few symptoms after an aggressive start to his MS.

Age at interview 37

Gender Female

Emma thinks that non-scientific treatments are not valid, though she understands why people try them hoping they might work.

Age at interview 37

Gender Female