My father was recently diagnosed with Myelodysplastic syndrome (MDS) (Myelodysplastic Syndromes), and he is finding it quite difficult to cope with the news. We are looking to connect him with other Gujarati-speaking patients who are going through a similar journey. We believe that being able to talk to someone in his native language would provide him with much-needed comfort and support.
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Hello @VijayPatel,
Welcome to the Forum and Thank you for posting.
I’m sorry to read about your Father’s Myelodysplastic syndrome (MDS) diagnosis and that he is finding it difficult to cope. You are right, talking to others going through the same can be really helpful and make you feel less alone.
I do know that Leukaemia Care has a ‘buddy’ scheme, for people with Myelodysplastic syndrome (MDS), it may be worth contacting them and asking if there are buddies that speak Gujarati: LeukaemiaCare/buddysupport They also run various support groups.
Another charity called Myelodysplastic syndrome (MDS) Support UK may have a buddy scheme, but I am not sure, again, you may wish to contact them and ask: MDSsupport/contact-us.
If your Father did have any questions, or need support and wanted to speak to one of our nurses, we do have a telephone translation service available if this would be helpful.
Our number is 0808 2080 888, and we can arrange this for him.
Hopefully there are others on this Forum, who can make suggestions too.
Do keep in touch and let us know how your Father is getting on.
Take care, Heidi. (Support Services Nurse).
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Much appreciate you reaching out and have looked at the 2 options suggested.
Kind Regards
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Hello there @VijayPatel, welcome to the forum. I’m really sorry to read of your father’s diagnosis, I imagine it’s a lot to take in even when explained in familiar terms. It’s lovely that you’re here to support him and I see that dear Nurse @Heidi_BloodCancerUK has offered great ideas.
Perhaps not quite as helpful as a person to speak with, but would your father like to read the Blood Cancer UK information about Myelodysplastic syndrome (MDS) as translated through an app like Google Translate? Here’s the BCUK MDS information in English. Maybe the various sections could be copied into a translation app and then be printed out or shared with your father in a way he can read at his pace? I remember when I got my Polycythaemia vera (PV) diagnosis I could not take stuff in and found reading proper research later helped me get my head round it a bit.
Anyway, just an idea. Apologies not to be able to offer direct help. Do please look around the forum though as I know of a few other members who live with Myelodysplastic syndrome (MDS) who have shared their experiences.
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Thanks Duncan for suggesting to copy sections from the Myelodysplastic syndrome (MDS) booklet into google translate to help my father get a better understanding of his condition. Im hoping a gujarati speaking patient replies who my dad can interact regarding their journeys.
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Oh you’re most welcome @VijayPatel.
If you check the search box at the top or related topics below you’ll find other forum members who live with Myelodysplastic syndrome (MDS) who might know of some language resources. It might be worth bearing in mind that Myelodysplastic syndrome (MDS) is rare and so there might be very few people with the exact same experiences as your father, even worldwide. When I realised how rare my own diagnosis of Polycythaemia vera (PV) is, what literature there is out there made me feel very grateful indeed!
Oh and another place you can get well-researched information about Myelodysplastic syndrome (MDS) is the American equivalent of here, Blood Cancer United: Myelodysplastic syndromes (MDS) | Blood Cancer United
Do please keep us posted about how your father gets on @VijayPatel.
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Hi there @VijayPatel
Hope you are doing well and thank you for your post.
I can see that others have came up with some great suggestions and I hope that you can connect to someone who Gujarati-speaking. It may also be a good idea to ask your father’s clinical nurse specialist to see if there are any local support groups or if they know specifically of a group in the local community who may speak Gujarati, but do hope you can connect with someone on our forum.
In case it is useful, may pages can be translated using the immersive reader.
I have attached some screenshots in case this can be helpful to you, using this page as an example. I appreciate this may not translate word for word but just thought I’d let you know as some people are not aware this can be done and end up putting a lot of information directly into google translate.
Take care & warm wishes,
Emma (support services nurse)
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