ORLANDO, Fla. – A local foreign-language teacher dealt with a debilitating condition that required blood transfusions for years before finally getting a life-saving transplant in Orlando. Now, she’s sharing her journey to finding out what was wrong and finding a cure.
“To my doctors and nurses at Orlando Health, you got me through the most trying time of my life. Thank you all for bringing me this far and giving me a new life,” Jaymala Lalwani said.
Lalwani is a recent bone marrow transplant recipient and just finished writing a children’s book to commemorate her experience and share its valuable lessons.
“The name of the book is, ‘Life is a Dance. Enjoy it,’” she said.
[EXCLUSIVE: Become a News 6 Insider (it’s FREE) | PINIT! Share your photos]
Lalwani is writing out of an abundance of gratitude and inspiration from her long journey.
“So, my author’s note is, ‘In life, we come across many ups and downs. Sometimes we have to go through very difficult times. If we try to be perfect all the time, we may put extra pressure on ourselves. This does not allow us to live in the present moment, and we lose out on the tiny joys that come our way. However, once we learn to let go and not let the small things bother us, we will be able to enjoy all the moments of life,’” she said.
Her new normal is regular blood work to ensure her levels are stable, a small sacrifice compared to what she’s been through. Lalwani suffered with health issues for years, unsure of what was wrong exactly, except for a persistently low blood count.
“I was actually not living life. I was just living like, you know, in fear and just trying to be OK,” she said. “I would be able to do one blood transfusion a year and then it would be fine throughout, but then that started getting a little more often. After about two, three years, it became, like, every six months,” she said.
After moving to Florida from Dubai to help her daughter, Lalwani’s health worsened. She went to see hematologist and transplant physician Dr. Samer Khaled and the care team at Orlando Health Cancer Institute.
“So, Jaymala’s case is very interesting. She had a rare kind of inherited bone marrow failure syndrome. It’s called Fanconi anemia. This is a very rare type of condition, it’s about 1 in 300,000 and the core fundamental or the basic fundamental of this problem is inability of the cell to properly repair the damaged DNA,” Dr. Khaled explained.
Dr. Khaled and the team recommended a bone marrow transplant over immunosuppressive therapy. When Lalwani learned she had not one, but two donor matches, she was overwhelmed with joy.
“I guess somehow, I feel there is a hand of God. I just feel I was so grateful that I just landed here in the right place,” she said.
It wasn’t all smooth sailing after the transplant, she faced some complications.
“Yes, in fact, you know, she is lucky. She had also, interestingly, that she had another rare condition that happened to her after transplant, something called transplant-associated thrombotic microangiopathy, which is also a rare condition in general. It’s more common in her condition, from corneal anemia, but it’s another condition that it is very hard to recognize and to treat after transplant,” Dr. Khaled said.
As Lalwani overcame issues with digestion and loss of muscle mass, she credits her care team for helping her make it through the process both physically and mentally, a story she is now grateful to share.
“I just felt like I can’t see the light at the end of the tunnel. They were there, you know, giving me a lot of advice, giving me pep talks,” she said.
Learn more about the Orlando Health Cancer Institute and how to register to be a match for someone in need, see below: