ORLANDO, Fla. — A local foreign language teacher dealt with a debilitating condition that required a blood transfusion for years before eventually receiving a life-saving transplant in Orlando. Now she shares her journey to find out what's going wrong and finding a cure.
“To the doctors and nurses at Orlando Health, you have been the most challenging time of my life. Thank you for bringing me this far and giving me a new life,” Jaymala Lalwani said.
Lalwani is a recent recipient of bone marrow transplants and has just finished writing a children's book to commemorate her experience and share her valuable lessons.
“The book's name is, 'Life is dance, so enjoy it,” she said.
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Lalwani writes from abundant appreciation and inspiration from her long journey.
“So my author's note is, “You come across many ups and downs in life. Sometimes you have to go through extremely difficult times. If you are constantly trying to be perfect, we may put extra pressure on ourselves.”
Her new normal is a regular blood test to ensure her levels are stable, and is a small sacrifice compared to what she has experienced. Lalwani had suffered from health problems for years, but was not sure exactly what was wrong, except for the sustained low blood count.
“I wasn't actually alive. I was just living in fear, as you know, and trying to be fine,” she said. “I could do a transfusion once a year and then it's OK overall, but it started to get a little more frequent. About two years later, it was every six months,” she said.
When I moved from Dubai to Florida to help my daughter, Lalwani's health deteriorated. She went to meet Dr. Summer Caledo, a hematologist and transplant physician, and the care team at Orlando Health Cancer Institute.
“So Jaymara's case is very interesting. She had a rare type of hereditary myelopathy syndrome. It's called Fanconi anemia. This is a very rare type of condition, one in 300,000, and the basic or fundamental thing in this issue is the underlying cell to properly repair damaged DNA,” explained Khaled.
Dr. Khaled and his team recommended bone marrow transplantation over immunosuppressive therapy. Lalwani was overwhelmed with joy when she found out there was not one but two donor matches.
“For some reason, I think there's God's hand. I feel so grateful that I just landed here in the right place,” she said.
Instead of all the smooth sailing after the implant, she faced some complications.
“Yes, she's actually lucky. She had another rare condition that occurred after the implantation, another rare condition called microvascular disease of graft-related thrombosis. It's also a common rare condition. This is more common in her condition from corneal anemia, but it's a different condition.
As Lalwani overcomes problems with digestion and muscle mass loss, she believes she went through the process, both physically and mentally, and helped her make it through a story she appreciates sharing.
“I felt like I couldn't see the light at the end of the tunnel. They were there, you gave me a lot of advice and gave me Pep's story,” she said.
Learn more about the Orlando Health Cancer Institute and how to sign up to become a match for those in need. See below.
About Orlando Health Cancer Institute
NMDP: How do I join the registry?
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