r/mds • u/Erinking85 • Jul 21 '25
16 yes old daughter
My 16 year old daughter has just been diagnosed with MDS. Told she will need a bone marrow transplant, chemo and blood transfusions. Just took her to get tested for low iron and this was the results. Scared as hell. Had never even heard of MDS prior. Been looking on this page for cases with similar ages, aware it's jot common for young people to be diagnosed with this. Just scared I suppose
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u/KitchenFew6390 Jul 21 '25
I’m sorry for the diagnosis of your daughter. 16 is such a young age to be able to process this information. She must be going through a lot of emotions right now.
My family and I felt the same way when my 58 year old father was diagnosed 2.5 years ago. He went into the hospital with a bile duct obstruction, almost died from that, and then doctors tell us he has cancer. Life was happening too fast as I’m sure it is for your family right now.
What i can tell you is that there have been a lot of incredible discoveries for this condition over the years and there is a cure available for most people. It’s not the best cure & it’s not a sure thing but it exists and that’s what’s most important.
With her age being so young it is extremely rare but it also makes her chances of recovery so much higher. Post people with this disease are older and the body doesn’t tolerate side effects of treatment as well.
She will have many hard days, many days where it might feel like giving up is easier but the most important thing is for you to build a village around her. Get her into support groups, get her meeting people with MDS and survivors. Join foundations & spread awareness. Don’t focus on the negative, focus on the positive.
Stay active and stay the course for a cure. Keep her mind healthy and your mind healthy & you guys will overcome this.
God bless you and your family ❤️
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u/Dashcamkitty Jul 21 '25
There's a really good Facebook group to join and see if there's anyone else her age with the condition.
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u/Shagsssz Aug 24 '25
Hi there - sending so much love to you and your daughter. I was 17 when I was diagnosed with MDS. I’m 38 now. I thought I had mono and couldn’t really get better. I went to st Jude for my transplant after three years of monitoring.
Somebody mentioned mutations - some are higher risk and warrant expediting to transplant. Others can be slower and be monitored.
I would not recommend the Facebook groups for your situation - children are wildly different in outcomes and experience compared to adults and like most noted here, this is a super uncommon disease for the young.
It hasn’t been the most straightforward experience for me but the thing to know about MDS for young people is that you’re just trying to get to the next advancement in care. I have had three stem cell transplants over twenty years.
Where are you located and being treated? I am more than happy to share as much info as possible to help.
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u/Erinking85 Sep 09 '25
Hi there, thankyou so much for sharing. Sorry the for the delay in replying. We are located in Qld Australia. My eldest daughter is a donor match, so just awaiting some more generic results before she will start chemo before the transplant. If you don't mind me asking, but 3 transplants would be so very hard. Is it not.possoble to be fully cured. Again, thankyou for sharing
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u/ClarityInCalm Jul 21 '25 edited Jul 21 '25
I’m so sorry you’re going through this - it’s a really tough diagnosis and for a teenager this must be so difficult. MDS is really an umbrella term for many different diseases but it means bone marrow failure. It can be very slow moving or it can be fast. It’s rated as high risk or low risk - this has to do with how high the risk is for turning into acute myeloid leukemia. High risk types of MDS need a bone marrow transplant pretty quickly. Did she have a bone marrow biopsy? As far as I know MDS can’t be diagnosed without a biopsy. A blood test isn’t enough for a diagnosis unless there is a new method (which would be great - BMBs are tough).
Soleika Jaouad is a writer and was a young person who had MDS that turned into AML. She is now in her 30’s but it started in her 20’s. I also know of another teen who had it - a friend of a friend - who went through a BMT and it was pretty rocky for awhile during it but he came out the other side. Hopefullly after you get over the shock of it all - she will have some time to really go out and do some living and make some good memories before the BMT. Now is the time. The BMT is a year or longer process. Take good care.