Recently diagnosed with AA possibly MDS

[Cindy J]

How does one cope with the illness as well as how do you become your own advocate to your treatments?

[LynnI]

Although I am very good at this time, when I was dx and when I was very sick it was a relief to finally have a dx. For the first couple of days it was hard, then I thought of our son. Better me than him. Also I never forget that although what I have isn't great, we can get a disease/condition that is so much worse. I think of the woman I know of that at 28 yrs of age, married with two little ones (2 & 3) started getting headaches a week before Christmas. She died 3 weeks later of a brain tumor. She didn't have a fighting chance, her disease took her and quickly. I know that they are making huge strides forward in treatment, drugs, research and hopefully in the near future being able to at least put our marrow failures into a chronic stage for many of us. So many people are now living much longer and with a high quality of life than just a few years ago.

As for being an advocate, becoming as educated as you can be about your disease and treatments is best, imo. Being able to question your doctor and demand detailed answers along with getting a second or third opionion if you need too.

That is what works for me.

[Neil Cuadra]

Welcome to Marrowforums, Cindy.

I agree with Lynn about the importance of learning about these diseases and asking questions. Being your advocate is vital to getting the best care. That means that you consider yourself a full partner in your medical team, partnered with the medical professionals.

I suggest that you contact the Aplastic Anemia & MDS International Foundation (AA&MDSIF) if you haven't already gotten their information packets. You can also find information about the diseases in our Bone Marrow Failure Diseases section.

You'll find a list of specific coping suggestions in our Coping with Aplastic Anemia and similar Coping with MDS sections. Everyone has his or her own way of coping but those tips can help. Sometimes it takes a serious illness to help us find our inner strength, but nobody can handle everything by themselves. The core of your support team is your family and close friends, but it helps to have people who have had first-hand experience with AA or MDS on your team too. You've found some by coming to this site.

Is your next appointment scheduled? You'll want to have a definitive diagnosis as soon as you can so you'll have more of an idea what's wrong, what to expect, and what treatment choices you have.

[Cindy J]

Thank you for your help with your suggestions and perspective. I am very supportive by my family and friends. That is what keeps me being positive and hopeful.

Originally Posted by LynnI

Although I am very good at this time, when I was dx and when I was very sick it was a relief to finally have a dx. For the first couple of days it was hard, then I thought of our son. Better me than him. Also I never forget that although what I have isn't great, we can get a disease/condition that is so much worse. I think of the woman I know of that at 28 yrs of age, married with two little ones (2 & 3) started getting headaches a week before Christmas. She died 3 weeks later of a brain tumor. She didn't have a fighting chance, her disease took her and quickly. I know that they are making huge strides forward in treatment, drugs, research and hopefully in the near future being able to at least put our marrow failures into a chronic stage for many of us. So many people are now living much longer and with a high quality of life than just a few years ago.

As for being an advocate, becoming as educated as you can be about your disease and treatments is best, imo. Being able to question your doctor and demand detailed answers along with getting a second or third opionion if you need too.

That is what works for me.