Young people and MS
In 2005 the Society ran an online survey designed to get an understanding of what younger people affected by MS need from the MS Society and what they feel are the issues facing them today.
Who took part in the survey:
76% of the people who took part in the survey had been diagnosed with MS, whilst another 5% were going through the process of diagnosis.Of those that answered, the biggest majority were aged between 22 and 30 but each of the age bandings were represented.
Everday life
55% were working – either full or part time, 13% were at University or School and 24% classified themselves as not working.30% were living with their parents, 43% owned their own house and 21.1% were living in rented accommodation.
58% were married or in a serious relationship, 37% were single and 4% were in a non serious relationship.
About their MS
At the time of diagnosis, 53% said they knew nothing about MS, and 28% said they knew very little. Of the remainder 16% knew a little and only 3% knew a lot about MS.The level of care received at the time of diagnosis was very mixed, 26% stated excellent, 49% said good or average, with 22% describing it as poor. 4% of people said that it was appalling however. Encouragingly 70% of people had access to an MS Nurse however.
Fatigue was described as the worst symptom by the highest majority, closely followed by imbalance and then sensory problems.
51% were on disease modifying drugs, 19% using physiotherapy with 11% using complementary therapies. 16% used diet as a means to control their MS and 14% were taking unlicensed drugs [eg cannabis or LDN] with 30% having had steroids at some point.
What else could the MS Society do for younger people?
The survey asked for suggestions as to what the MS Society could do to support younger people with ms. A common theme was the setting up of local support groups for younger people, but many did appreciate the difficulty of providing local services to young people, if there were no young people involved in setting up the services.
Other suggestions related to the types of information available to younger people, with the following suggestions for what they would like:
- relationship advice [eg telling a partner about ms or dating new people]
- help with explaining ms to young children
- information on where to get financial support
- advice on what questions to ask medical professionals
- Advice on moving away from home for the first time
- Support for parents of young people with MS
