"I was so worried about how I would cope - I wasn't sure if I could look after myself, let alone a child."
Most people are diagnosed in their twenties and thirties, at exactly the time when they may be thinking about starting a family. Many people might be concerned about whether they should have a baby if they have a diagnosis of MS. Soon-to-be parents with MS may have many worries about how they'll will cope with having children. There may be financial worries, or the more practical things - how will you manage your MS fatigue on top of the regular stresses of parenting? How can you change nappies if you are going through a relapse and have problems using your hands? You are not the first person to have children with MS, nor will you be the last! The information below may point you in the right direction.
Can I pass MS on to my children?
MS is not inherited in the same way as some other conditions. Children with a parent who has MS do have a slightly greater risk of getting MS, but the effect of this is that only 2 out of 100 are likely to get MS because their parents have the condition. A leaflet called All in the genes explains more.
Finances and practical help
You receive child benefit when your child is born, which can help with some costs. It is always worth getting in touch with your local authority, particularly the social services department, to see if they can offer any support. Depending on how you are affected and the eligibility criteria in your particular authority, you may be eligible for some services. You can also choose to receive these services in the form of Direct Payments, which gives you the flexibility to use the payment in a way that is most useful to you. There are no benefits offered automatically to parents with MS, but you may be eligible for benefits, depending on your circumstances. See our Benefits pages for more details.
It might be worth getting in touch with Home-start, a charity helping parents with young children. They have volunteer support workers all over the country who can offer you information and support. The Disabled Parents Network can offer information, advice and support, including information on equipment such as a breastfeeding pillow, or a carrycot that fits onto a wheelchair. An occupational therapist can visit you in your home and advise you on equipment or adaptations to enable you to cope as independently as possible - get in touch with social services to find out more.
It might also benefit you or your partner to speak to other parents with MS – see our section on getting in touch with people with MS.
Other sources of support
Disability, Pregnancy and Parenthood International (DPPi) is a small UK-based registered charity, controlled by disabled parents, which promotes better awareness and support for disabled people. DPPi is a charity for disabled people who are already parents and their families, those who wish to become parents and their families and also for health and social work professionals and other individuals and organizations concerned with disability and/or pregnancy and parenting.
American site MS Moms provide simple down-to-earth information on MS. They have created a web-based community where families with MS can connect,
running message boards, chats, and mailing lists to stay in touch. They
focus on the idea of learning to live with, and laugh at, their MS.
The Multiple Sclerosis Society of Great Britain and Northern Ireland is a charity registered in England and Wales (207495) and Scotland (SCO16433)
