Anna Sobon | Aplastic Anemia and MDS International Foundation

I'm like you:

Anna Sobon

19-year-old Anna Sobon had been a typical college sophomore, active and full of plans about making her dreams come true.

When she began to get increasingly tired, she  thought it was due to her hectic schedule or maybe some lingering after-effects of her bout with mononucleosis the previous summer. Even as her strength was dwindling, Anna stayed determined to keep up with her daily routines while she waited for her symptoms to simply go away.

It turns out that Anna had aplastic anemia. Her only option in 1985 was a bone marrow transplant at the Fred Hutchinson Cancer Research Center. It was very much an experimental procedure. But she had hope and a strong support system. Both served her well in her recovery.

Disease Icon

Disease

When her low energy reached the tipping point, she knew she had to go home to Sacramento, CA, to see her family and her doctor.

“He said my blood counts were so low that I shouldn’t be walking. I shouldn’t even be alive! It was a huge shock and it all happened so fast that I didn’t have time to process a decline in my health.”

Fortunately, the college student had a doctor who was familiar with bone marrow failure diseases. She was quickly and accurately diagnosed with aplastic anemia. With no time to waste, her doctor immediately tested her siblings to see if there was a DNA match in the family.

Treatment Icon

Treatment

Anna got lucky. Both of her siblings were perfect DNA matches.

Within a week, she was rushed to Seattle for her transplant. The doctors had chosen her 12-year-old sister Theresa to be Anna’s “savior”. But even as she faced her own fears about the procedure and its unknowable outcome, Anna worried that her little sister would feel responsible if the BMT didn’t work.

“For my part, I was extremely excited and elated, jumping up and down and running over to my friends’ house to share the news,” said Theresa. “I was blessed with the opportunity to be a part of this and give my big sister the chance to survive,”

Anna recalls her relief, as well as her doubts. “I was so lucky that the transplant cured me, but I have to admit that for a while, I kept thinking that the other shoe was going to drop. It took me probably five years to feel like I’m okay, and that I’m probably going to stay that way.”

Education Icon

Education

There was no Internet at the time of Anna’s illness and precious little information on bone marrow failure disease available anywhere.

She remembers looking up aplastic anemia in one of her mom’s old medical books prior to transplant and reading with horror that it was almost always fatal. Luckily, science and Anna have come a long way since then.

She’s even had three opportunities to prove her doctors wrong. After telling her the heartbreaking news that she’d never be able to have kids, Anna gave birth to a daughter, followed a few years later by twins – all natural births and all healthy children.
”Suffering teaches you a lot, including that you can survive,” said Anna. “I got this amazing chance for a second life." 

Support Icon

Support

”It was such a devastating and emotional experience, and it had a huge psychological impact on how I looked at life,” Anna told us.

Recovering from a rare disease has hurdles to overcome, but with an exceptionally powerful support system Anna got better.

Her mother, a former nurse, was with her every step of the way. “Mom was there every day, and she slept in my room on a Barcalounger every night. She was there for 28 days in the hospital plus the two months I was treated as an out-patient,” said Anna. Like all transplant patients, she couldn’t go out in public without a mask, had a compromised immune system, was prone to illnesses and didn’t have hair because of the massive chemotherapy. “When I got back from Seattle, I went into counseling for depression because I did have PTSD.” Little by little, Anna took her life back.

 

Anna Today

Anna's health crisis happened decades ago.  "Now I'm 32 years out from my transplant and I feel good… really good.”

In December, Anna volunteered for AAMDSIF’s National March for Marrow event, she says because the organization was such a beacon of hope for her when she found it. “I think especially for the newly diagnosed, it’s a lifesaver to know that there’s a group of people out there who understand what you’re going through and are ready and waiting to help you.”

Contact AAMDSIF to find out how you can become an Ambassador like Anna.