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Younger Patient Information

Tagged: Young age information

This topic has 4 replies, 4 voices, and was last updated 6 years, 6 months ago by Maxwell LaFrance.

Viewing 5 posts - 1 through 5 (of 5 total)

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September 25, 2017 at 11:10 am #33833

Maxwell LaFrance
Participant

Hi,
I’m Max, and I’m a 29 year old man that was diagnosed with early stage MDS a few months ago. I’ve read most of the easily accessible information on the internet about the disease, but there’s not much available pertinent to my age range.

If anyone has experience with this situation, or could send some links I’d appreciate it.

Thanks,
Max

September 25, 2017 at 12:05 pm #33834

mdsfound
Moderator

Dear Max, Thank you for your email with information regarding your health. Do you have a copy of our Building Blocks of Hope or 100 Questions and Answers About MDS? Please email me at patientliaison@mds-foundation.org and I will put together an information packet for you. I can also connect you with another young MDS patient for support. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us.

September 26, 2017 at 2:56 pm #33847

Gayle Nicholson
Participant

I was diagnosed at 32 years old and am now 61. My type is RARS and have had a slow progression so far. i receive regular blood transfusions every three weeks and am doing well with this cancer. When I was told I had this devastating illness, the Doctors thought i would not survive longer than 5 years, but that is not the path I choose for myself. I follow my own path and beat my own drum, as they say. A possitive attitude and faith that this is not yomy self gratification . I perceive my life to be one of healing and helping and I am not done yet. There are many people who could use a hand now and then and I wish to help some of those souls.

September 27, 2017 at 9:30 am #33857

Allan Romriell
Participant

Gayle,
I am 64 and was diagnosed with RARS a few months ago. From my study this seems to be the mildest form of MDS there is but for you to have survived 31 years with it is pretty amazing from all I have read. How long have you been in some type of treatment? I am on wait and watch right now and hope to stay that way for quite a while, but I know it can change in a hurry. When I see someone like yourself who has survived so long it does give me hope. Thanks for sharing and for all you do.

September 28, 2017 at 12:56 pm #33863

Maxwell LaFrance
Participant

Gayle,

It is encouraging to hear that you’ve been able to manage the disease for such a period of time. If I may, I have a couple questions. Have you experienced any of the growth factor treatments? Do you need to do anything to keep your iron levels in check because of the transfusions?
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