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Lehann Lattimore's avatar

Daughter diagnosed in 2019 with RRMS, aged 15.

IRTs were not discussed and we had no knowledge of them although we were convinced the ‘hit it hard early’ was the way to go.

Mum had MS and we were too familiar with the consequences of being under treated.

She started on Dimethyl Fumarate but did move on to Ocralizumab after 12 months.

Our research led us to believe HSCT would bring her the best long term outcome. Her paediatric neurologist was supportive of our opinion but aside from considering other criteria age was a factor.

A few months after turning 18 she was approved for treatment under Dr Kazmi. Unfortunately not NHS funded due to no new lesions on MRI but other factors pointed towards a less favourable long term outlook (heavy lesion load/age at diagnosis/lesion location).

She is now almost 3 months post transplant and doing well.

She’ll be involved in a Q&A session along with 3 others discussing their experience of HSCT at the AIMS Summit at the end of the month.

Being just 19 she is keen to share her perspective on her experience in the hope that others young people in similar situations become aware of their options. (Not named on the programme as only recently been confirmed)

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cpep's avatar

The more I read your newsletter, the more I realize my fear and lack of knowledge has not served me well. I like to think of myself as smart, but MS has pushed me to a level of denial that I am astonished at. Denial and some early trauma related experiences that have contributed to my "toughing" it out on my own, not believing I deserved to receive help etc. I am now looking at Cladribine - 61 years old with increasing progression in the last 4 years, - if this can help me stabilize into the future, I think it is time to advocate for myself and begin a treatment, better later than never. It is so hard for me to contact my neurologist to ask for this potential, which is bananas, but there ya go. A giant, heartfelt thank-you for all you do.

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