Elle Crofton was diagnosed with myelodysplastic syndrome (MDS) at age 25 after initially attributing her fatigue and gastrointestinal issues to a busy lifestyle. MDS is a rare blood disorder that can develop into leukemia, typically affecting older men. The article details her journey to diagnosis and explains the condition and its potential complications.
It was Elle Crofton's 25th birthday when she got the official diagnosis. In May 2013, she traveled to the University of Texas MD Anderson Cancer Center to confirm what her doctor in Philadelphia had suspected: Crofton had myelodysplastic syndrome , a rare disorder that can develop into a form of leukemia, which most often affects older men.
At the time, Crofton was a busy 20-something, working at a preschool, hanging out with her friends and going to CrossFit early in the morning. So when she first started feeling tired and having gastrointestinal issues, Crofton, now 37, assumed her packed schedule was to blame.
'I'm just overworking myself. I need to calm down,' she remembers telling herself. But the fatigue just got worse.
'Some mornings, I would just not wake up to my alarm,' she tells TODAY.com. 'I would come home from working out, take a shower and just fall asleep for three hours. ' And then she started getting sick frequently, she says, so she went to her primary care doctor. Her bloodwork looked a little off, so she was referred to a hematologist.
That was the first time Crofton heard she might have myelodysplastic syndrome. It wasn't until she got a second opinion in Houston, Texas, where her parents live, that the gravity of the situation began to set in. A Rare Diagnosis With Potentially Serious Consequences Myelodysplastic syndrome is condition that affects the stem cells responsible for producing bone marrow and blood cells, Dr. Guillermo Garcia-Manero, an oncologist specializing in treating patients with leukemia at MD Anderson, tells TODAY.com.
About one in three people with the disorder will go on to develop acute myelitis leukemia, an aggressive form of cancer, the American Cancer Society says.
'The most common manifestation of the disease is anemia,' Garcia-Manero explains. Often, it's picked up at a regular checkup and the patient may not have any noticeable symptoms. Among younger patients, even if they do have symptoms, 'they may not go to the doctor right away,' Garcia-Manero says. In Crofton's case, 'I had about half of the amount of red blood cells that you're supposed to live on,' she recalls, 'so that was really tough physically.
' Once she was diagnosed, Crofton began taking a drug called Revlimid, which helps the immune system fight cancer and boosts red blood cell production. Some patients are able to achieve a complete response on the drug, which essentially means remission and a good chance for long-term survival, Garcia-manero says. But ultimately, Crofton says, 'the end game was that I would need a stem cell transplant.
' And the drug would allow her to put off the transplant for as long as possible. Without treatment, Crofton’s body would have continued to make too few red blood cells. Over time, that can lead to serious complications and potentially death. The Drug Only Worked for Her for 2 Years 'After that summer, I came back to Philly and started living my life again,' Crofton says.
The drug had very few side effects and seemed like no big deal.
'You just start taking a pill every day, like everyone takes heartburn medicine,' she says. And she was able to go back to Texas for her quarterly checkups and to visit her family around Christmas and Easter. She was hoping to get five years with the medication, but about a year and a half later, Crofton learned that the drug had stopped working.
Crofton had done some Googling about stem cell transplants and what she found was 'very scary and very intense,' she recalls. Learning that she would need one years sooner than she'd thought was 'when reality set in that this was going to be big,' she says. At the same time, 'I've always been somebody who's wanted to have children,' she says.
The chemotherapy required for the stem cell transplant would affect her fertility, and the procedure would likely send her into early menopause. So Crofton started asking about her options. She Was Able to Squeeze in a Single Egg Retrieval Cycle Crofton was one of Dr. Terri Lynn Woodard's first patients at MD Anderson. For many of Woodard's young patients, their cancer diagnosis may be the first time they've really considered the idea of having kids.
“What struck me the most about was just how intentional and how well she advocated for herself at such a very young age,” Woodard, a reproductive medicine expert who specializes in working with cancer patients, tells TODAY.com. Crofton needed to wait for a bone marrow match before her transplant process could start, so she and Woodard took advantage of that time to squeeze in one egg retrieval cycle.
They were navigating 'uncharted territory,' Woodard says, because fertility treatments are typically studied in healthy patients who aren't taking a lot of medications. For someone like Crofton, 'there is no way to look up what this will exactly look like,' Woodard explains.
'This might not work,' she remembers telling Crofton, 'but this is your window of opportunity. So if you're OK with that, let's go ahead and take it.
' During the cycle, she was able to get nine eggs — and learned that she had a bone marrow donor match. An Intense Transplant, Long Recovery In May of 2015, just two years after her diagnosis, Crofton underwent a stem cell transplant, a process that she describes as both long and intense. Today, a transplant is the only way to really cure myodysplastic syndrome, Garcia-Manero says.
Other treatment options, like the drug Crofton was taking, can help you live longer, but they 'never really eradicate' the stem cell at the root of the condition. The first step in this type of transplant is to get 'significant chemotherapy' to wipe out the patient's bone marrow, Garcia-Manero explains.
Then, the patient gets healthy bone marrow from a donor.
“I was in the hospital for about a month,” Crofton says. “They take everything from you, and your body has to basically rebuild from the beginning. ” And recovery was a challenge of its own. Although she was able to leave the hospital after a few weeks, she had to stay close by to come back for 'transfusions, checks, all sorts of things,' Crofton says.
She ended up staying with her parents for about two years to recover and says it took her that long 'to finally feel like a regular human again.
' While the transplant was successful, she did have some side effects. For instance, her skin felt 'itchy, gross and horrible to be in for a while,' she says. This is a typical manifestation of graft vs. host disease, Garcia-Manero explains, which arises when the body treats the new stem cells as foreign threat and begins to attack them.
She and her parents spent this time focusing on the positives, like celebrating when she made it to 100 days post-transplant by getting her head decorated with henna. And Crofton went to graduate school online to get a degree in education to create a new routine and keep her mind on her future possibilities.
Finally, she was able to move back to Philadelphia and start the next phase of her life. She's currently healthy, but still needs long-term monitoring in case her condition returns or complications arise from the transplant. Two Halves of an IVF Journey — 12 Years Apart Crofton, now a kindergarten and first grade teacher, always knew she wanted to be a mom.
She remembers telling a friend that, if she didn't have kids by 35, she would try to adopt or look into other options.
'And 35 came and went,' she says. 'And then 36 happened, and I was like, OK, we need to make this happen. ' She had her eggs shipped from Houston to Philadelphia, and started what she thinks of as 'the second half of my IVF journey,' Crofton says. 'My first half had happened 10 years ago.
' Using donor sperm, she was able to get three embryos, but only one was viable for transfer. But one was all she needed. And her son, Harry, was born on Jan. 29 of this year. Woodard, who also attended Crofton's baby shower, hopes patients facing a cancer diagnosis remember that they do have fertility options.
While finances or illness may make it challenging to take advantage of those options, fertility services can offer patients some agency at time when things often feel overwhelming. Seeing Crofton be able to live such a full life, including now as a mother, gives Garcia-Manero “tremendous satisfaction” and “is really emotional for me,” he says, because it shows that “when you potentially cure someone, you can help them develop to their full extent.
” As for Crofton, she hopes her story shows the power of becoming a bone marrow donor — not just for the recipient but for their entire future and family. And she wants others to be their own biggest advocate.
'Your doctors are there to make sure that you are healthy and surviving and alive,' she says, 'but you want to make sure that you, when you come out the other end, that you've set yourself up for the future that you want. '
Myelodysplastic Syndrome MDS Leukemia Cancer Diagnosis Fatigue
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