MDS is a bone marrow failure disorder
MDS is a blood cancer
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Ashley Camara

My Story - Ashley Camara

Ashley Camara

One Life For The Two Of Us.
By Ashley Cámara 

My story begins a few years back…in Mérida, Yucatán, México where my brother and I were born and raised. My brother and I were the type of kids that would rarely get sick.

We were raised to be very independent, responsible, caring, hardworking people that loved spending time with friends and family and we shared a passion for helping others. 

In November of 2013, my brother recently graduated college and was starting his life, but he just wasn’t feeling well.  One weekend he stayed in his room and didn’t want to socialize, he just wanted to sleep. We checked on him regularly all he could tell us was “I just don’t feel good”. As the days passed by, his skin started to turn yellow.  We thought maybe it was hepatitis and he went to get a blood test. A few hours later, the laboratory called and told him to immediately go to the E.R.  

I will always remember that phone call. I was in college and my heart stopped for a second when I heard the news.  November 26th of 2013 is the day is when we found out he had MDS. Myelodysplastic Syndrome.  

When I found out about his diagnosis, I didn’t know what to thing.  I was scared but all we could think was, “OK, MDS, what is that?” We had no idea about Myelodysplastic syndrome. We had never even heard of MDS and he was only 23 years old, why did this happen to him? As we learned more, we found out that MDS is often referred to as a “bone marrow failure disorder”, which can develop into a type of Leukemia. It is usually a disease of the elderly and this is why we couldn’t understand why my brother developed it at such a young age.

Next, was the treatment plan. What was needed to cure him? The end game was that he needed a Stem Cell Transplant.  A Stem Cell Transplant is a procedure that replaces defective or damaged cells in patients whose bone marrow is damaged. The doctors were trying to find a donor but according to his genetic “make up” it was going to be difficult to find an exact match. So the doctors decided on a half match donation. My mother was to be that donor.

We had to travel to northern Mexico to find a hospital with the proper equipment, away from our home and support network.

Though also diagnosed with AML (Acute Myeloid Leukemia), he underwent a Stem Cell Transplant but because of his low immune system, my brother died in January of 2015 at the age of 24.  When he passed away, I wondered if I needed to start getting tested more frequently as a preventive measure.  I remember the doctor telling me that it is rare that siblings could have the same disease.

But in August of 2016, I woke up with my feet hurting and not being able to walk. After 3 ½ weeks in the hospital, at the age of 22, I was also diagnosed with Myelodysplastic Syndrome.

Now, I was the patient.  I too needed a Stem Cell Transplant to survive. This time we went to the Chicago area, where we have family, and found Dr. Lucy Godley and Dr. Satyajit Kosuri at the University of Chicago Medicine.  Dr. Godley discovered that I had a mutation in the GATA-2 gene, a common factor they had recently discovered and the reason why some young adults were developing MDS. I was fortunate enough to have several unknown, unrelated perfect matches and I received my Stem Cell Transplant June 27th 2017.  It was a scary day, especially knowing what my brother had been through, I was scared that I would die too.

There were many aspects that came into play after transplant: not being able to eat, throwing up frequently, and physical and emotional changes, very few visitors to limit infections. It took me a long time to actually feel “normal” and heal.

When you go through something like this for the first time with someone you love, it can be very hard.  But when you have to go through it again, this time as the patient, it’s even harder. There are no words that can make you feel better; you just have to get through it.

The recovery process wasn’t easy. I believe unconsciously I decided to live for my brother and for myself. He didn’t have the chance to live the full life he deserved, so I was determined to live it for him, and for me.

I am currently two years’ post-transplant and enjoying every single day. I work two jobs, workout, travel, I’m independent from my family and I have been advocating for MDS awareness, AML (Acute Myeloid Leukemia) and I continue to learn more and more about these diseases. One of the events I recently participated in was the first ever MDS walk/run in Chicago.  I ran a 5k. I was very proud of myself and I felt my brother running beside me the whole way.

If you are going through this illness as a patient keep pushing forward.  It is hard, painful and it can be a long recovery like mine.  But you will get there. If you are caring for someone, be patient, as us patients tend to take out our frustrations on you, the caregivers. If you know someone with this disease, be there for them, they need you, even if they don’t ask for help. Just sitting in a room is a comfort as they know you are there for them.

My motto after all of this is, “live and love life”. I got a second chance and I am doing this not just for myself but for the both of us.

With love,

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