gpeps 10/03/17
Last reply 1 year ago
Impact of MS on pregnancy and children

Hi all

We are looking for people to participate in a research project aimed at understanding the impact of MS on pregnancy and having children. The results from this research would be used to help raise awareness and support for people with MS with children or who would like to start a family.

If you meet the below criteria and are interested in being involved in one of the meetings (either London, Birmingham or Leeds – sorry, this is a UK only study, not our decision!), please email [email protected] with your name and preferred location.

Research group criteria:
Female
Aged between 18 and 40
Diagnosed with relapsing-remitting multiple sclerosis (RRMS) in the last five years, and:
– Thinking about starting a family in the near future, or
– Had a child/been pregnant, or
– Decided against having children

Participants would attend one of three planned meetings (provisionally London, Birmingham & Leeds) lasting around two hours to explore all the potential issues and factors related to decisions on having children and MS. No preparation is required for the meeting. The meetings would take place in March or April 2016 at readily accessible, central locations.

The meetings would help inform the development of a questionnaire, which we aim to have completed by over 100 women with MS later this year.

Reasonable travel expenses will be reimbursed after the meeting along with a token of appreciation for your time.

Thanks
G

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gates1989
1 year ago

Ah I’ve been diagnosed nearly 10 years, would’ve been interested in this as well!


lucyh
1 year ago

Good morning G, the researchers might be missing out on a rich source of information, namely those with MS who had children in their 40s!


Anonymous
1 year ago

Yes I would have taken part too but just over 40 and diagnosed for 11 years. That’s a shame.


gpeps
1 year ago

Thanks for getting back. I’ll certainly ask if they can be more flexible with the criteria.

Will let you know


northeast19282
1 year ago

Hi

I would certainly be interested in taking part. I am 34 and was diagnosed 5 years ago, and this is something that my husband and I are really struggling with at the moment. We would love to start a family but are grappling with the idea of how we will cope with managing my varying mobility and working full time (having a little person who is dependent on you at the same time seems terrifying and i can’t help but wonder if I am just being selfish!). It certainly is a minefield and that is why I think this would be a great thing to be involved in.

Thanks

Catherine


antonia42
1 year ago

Hi g,
I’ve got SPMS and diagnosed 18 yrs ago. I would have loved to have taken part (we are currently trying for our first baby) but it looks like not only have I had ms too long but that those with SPMS are excluded…

Any chance you could explain why the project was limited to RRMS and to the 5 year diagnosis?

I saw the Facebook post this morning and it actually made me rather sad…feels like you kind of fall off the map when you get SPMS…

Looking forward to your response and understanding more about the project,
Antonia x


gpeps
1 year ago

Hi @northeast19282 – thanks for getting in touch. Would be great to have you involved. Please could you email: [email protected] ? Let me know if any issues.

@gates1989 @vickivictoria @antonia42 – thanks for getting in touch and apologies this particular research project is not open to a wider group. To explain the restrictions (don’t shoot the messenger!):

5 years since diagnosis – a number of DMTs have become available in the last five years which have significantly altered the landscape. The steering group felt that to best understand the current impact of diagnosis on pregnancy, they should limit recruitment to the last 5 years. I did fight your corner!

@lucyh – I agree, I think the age limit should be at least 5 years older as long as the other criteria are met; diagnosis is in the last 5 years; had first child or decided against having children post-diagnosis.

When were you diagnosed?

Fact for the day: In the UK I believe there are now more children born to mum’s over 40 than under 20.

Thanks everyone for your interest!
G


lucyh
1 year ago

Hi @gpeps, I was diagnosed in 2013, a year or so after having my child…however, I had been visiting GPs and Neurologists for many years before that with the same symptoms….nevertheless, my (fantastic) MS nurse says you’re diagnosed the day you are diagnosed,so I guess the clock started ticking in 2013. If your researchers decide they want to focus on 40+ mothers in the future, they will find stacks of them in and around the Cambridge area (indeed, Simon Baron-Cohen is conducting his research on Autism on the shoulders of older mothers, with their need for extra pre-birth examinations!).

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