I’m a currently healthy 40-year-old girl. I have not been diagnosed with Myelodysplastic syndrome (MDS). My red cells/hemoglobin level has been trending down for the last two years to the borderline low level. I do get tired quite often. That’s not enough to think that I might have Myelodysplastic syndrome (MDS). However, my dad passed away from Myelodysplastic syndrome (MDS) and so did his two siblings. They had a shorten telomere gene which manifested into many problems and Myelodysplastic syndrome (MDS) was one of them.
My red cell level is not at a dangerous low level. So since the Myelodysplastic syndrome (MDS) problem doesn’t seem to have a cure yet, only symptoms are being treated, I don’t know if I should get tested at all.
I would love to hear from someone who has been diagnosed at a fairly young age with my similar conditions. Are you getting treatments at all or just being watched? If you do have treatments, what are they if you’re allowed to mention here? The most important thing I want to know is if being diagnosed early would help my chance of survival?
Thank you so much in advance.
Hello there @Anhtaa, welcome to the forum. I’m really sorry to read of your dad and his siblings being diagnosed with Myelodysplastic syndrome (MDS) and passing away due to it, what a lot of loss you’ve experienced. I really hope you’re bearing up okay.
Although I was diagnosed with a different Myelodysplastic syndrome (MDS)-adjacent blood cancer in 2023 called Polycythaemia vera (PV), I actually only found out due to a close relative being diagnosed similarly before me. It inspired me to have my blood checked for the same JAK2 gene mutation, and lo and behold I also have it. This led on to my diagnosis with Polycythaemia vera (PV) and here I am nearly 2 years later, finding this forum very supportive indeed.
While my specialists and research I’ve read say that these sorts of gene mutations don’t tend to be hereditary, I’d say it’s worth bearing in mind that families will likely encounter the same environmental carcinogens. That’s why I reckon 2 of us so closely related have the same gene mutation.
Could it be that your dad and his siblings were around the same carcinogens? Could that have affected you too? I might be tempted to seek genetic testing in your position, just to be sure. If it’s of interest, here’s the Blood Cancer UK information about Myelodysplastic syndrome (MDS): Myelodysplastic syndromes (MDS) | Blood Cancer UK
The way I see it is that if we find something genetically off when we’re younger we probably have more time to prevent it worsening in an uncontrolled way, as opposed to waiting to react medically after the fact. I found my Polycythaemia vera (PV) prior to symptoms occurring, and I reckon I’ve had a relatively easy time of dealing with the treatments because they’re preventing my blood cancer from worsening. Being diagnosed while “young” means I also have time ahead when medical advances might find ways to bring on remission or even a cure.
I hope others who have lived experiences of Myelodysplastic syndrome (MDS) can offer their advice too @Anhtaa. Maybe have a look around the forum for threads relating to Myelodysplastic syndrome (MDS)?
Do let us know how you get on. And again I just wanted to say how sorry I am for your losses.
Hi @Anhtaa thanks so much for posting on our forum and @Duncan has given you a great response.
It must be so difficult for you having your dad and his 2 siblings passing away from Myelodysplastic syndrome (MDS).
I hope others will be able to share their experiences for you.
Obviously It is up to you whether you get tested or not, but personally if something is playing on my mind then I need to do something about it.
Personally again, I feel the earlier that I get a diagnosis the easier it is to have it either monitored or treated.
I always write down my fears, questions and practicalities before any medical appointments so I cover everything.
If you would like to talk to the Blood Cancer UK support line they are on 0808 2080 888.
Really look after yourself and please do let us know how you get on.
Thank you @Duncan and @Erica for your reply.
My name is Ana, by the way.
My dad and his siblings all had the Shorten Telomeres gene. So it’s not an environment thing. My dad lived far from his siblings for a long time too.
I might get tested for this gene. If I do have it, I will get tested for Myelodysplastic syndrome (MDS) too. This gene manifests itself to different problems. Besides having Myelodysplastic syndrome (MDS), they all had pulmonary fibrosis too.
I’m planning to see a hematologist sometime this summer.
I’m glad I found this community.
Ana
Oh you’re most welcome Ana, I’m glad you found the forum too.
Sounds like you’re knowledgable about Myelodysplastic syndrome (MDS) and perhaps others around the forum can learn from you like I have—don’t hesitate to comment on topics that you can relate to, it can be so helpful to share on here.
Thought you might find it interesting to note that I also lived far from my relative after my teens and yet we still ended up with the same mutation! My haematologist said that it was more likely to be triggered by something we were both exposed to in childhood, for example cigarette smoke, than something hereditary.
Anyway, the genetic side of it all is a bit beyond me. It’s felt like a crash course in haematology for me since diagnosis! Hopefully you won’t need to know more than what you’ve already experienced.
Please keep us posted, Ana.