From a Patient's Point of View:
All You Need is the Wish
(While
attending meetings and conferences, CAF members encounter many wonderful
individuals with thalassemia from around the world. They come from different
backgrounds, but they all share a firm commitment to fighting thalassemia. Below
is a profile of one of these individuals.)
"My dad is very strong and
really made a difference. When he was told I had thalassemia, he decided he
would cry only at my funeral. Until then, he would devote himself to searching
for the best treatment available from anywhere in the world." So says Merula
Steagall, a 36-year-old Brazilian woman who is president of ABRASTA, the
Brazilian Association of Thalassemia. Attractive, self-assured and giving,
Merula credits her parents with instilling in her a determination to live a full
life despite thalassemia.
"I always received a lot of love from my parents," she says, "but they also
taught me responsibility, especially with regard to my treatment. As a result, I
always wanted to maintain the best treatment, because I knew I needed to be well
to do all the things that I wanted to do. I loved parties, friends, boy friends,
sports; but I knew that to enjoy them, I needed to have discipline in my
treatment."
Merula began chelating when she was four years old, taking Desferal through
injection. Her father obtained a pump for her from London when she was nine or
ten; she now uses a microjet pump five or six days a week. L1 was recently
approved for use in Brazil, so she will soon start a new therapy (four days of
L1 and three days of Desferal.)
When she was growing up, Merula's parents had to import Desferal from Greece.
Now the government pays for Desferal for patients, although about half of
ABRASTA's 485 patients lack new pumps. "But all of us at ABRASTA are working
hard to change that and make sure that all Brazilian centers have the best
treatment options available, and in the shortest time -thalassemia patients have
no time to lose! We have many advantages in Brazil: wonderful people, wonderful
doctors. Now we need to raise funds to implement improvements. There are many
challenges, but there is much more good will to win!"
Merula met her husband, Denis, while in college and told him in stages about
her thalassemia. "He accepted all of this, seeing how naturally I handled these
'problems.'" Denis and Merula are the birth parents of nine-year-old Daniel and
five-year-old Dina and the adoptive parents of three-year-old Roberto. "Before
getting married, I traveled to the U.S. on business and decided to get
information about older patients, pregnancies and so on. I was lucky to meet
wonderful Sophie Sioshillos, who introduced me to all the wonderful patients and
friends of TAG. I also met a fantastic doctor, Fernando Tricta, in my country,
who never said no to any of my wishes but still gave me the best advice."
Merula needed no special care during her pregnancies. She interrupted
Desferal therapy before the confirmation of the pregnancies in the cases of both
Daniel and Dina and experienced no complications during or after the
pregnancies. In between Daniel and Dina, Merula was pregnant again, but the
child developed anecephalia and did not survive. When she heard about a baby in
need of adoption, she said, "Don't worry, this baby is mine," and immediately
adopted him. "I knew another baby was waiting for me, it just took time for us
to find each other."
A believer in positive attitudes, Merula says, "Thalassemia is no limitation
to doing anything. Life is a wonderful, endless construction. "You can be
anything you wish. All you need is the wish."
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