Thalassaemia is the name given to a group of inherited blood conditions. People with
\nthese conditions produce either no, or too little, haemoglobin. This can lead to health
\nproblems, as haemoglobin is used by red blood cells to carry oxygen around the
\nbody.
\nThalassaemia can have a significant impact on lives. It can result in anaemia,
\nleading to fatigue, poor growth and, in severe cases, lifelong dependence on blood
\ntransfusions, sometimes as often as every 2-4 weeks.
\n“The first thing I’d say is having a child that needs regular blood transfusions is really
\nhard,” says Reena, who lives in Medway. “It took me a while to come to terms with
\nemotionally, not to mention the mental toll on Jovan and all of us in taking him to
\nappointments so often.”
\nBlood transfusions are a two-day process for Jovan and his family, requiring them to
\nattend hospital on a Sunday for blood tests and Monday for the blood transfusion.
\nReena says: “On the day of the blood transfusion, we’re normally there for about
\n8:30am and we finish by about 3pm on a good day. It’s hard because my husband
\nand I work full-time. Managing his condition around work has been a challenge.”
\nAlthough anyone can have Thalassaemia, it's much more common in people from
\nSouth Asian, Southeast Asian, Mediterranean and Middle Eastern backgrounds.
\nThere are around 2,300 people with Thalassaemia in the UK, with an estimated 800
\npeople with the severe form of the condition relying on regular blood transfusions. In
\nthe UK, the largest groups affected are of Pakistani, Indian and Bangladeshi
\nethnicity.<\/p>\n\n
How do you get Thalassaemia?
\nThalassaemia can only be passed from parents to children through genes. Around
\n200,000 people in England carry the gene for Thalassaemia.
\nHaving the Thalassaemia gene (not the condition) will not generally cause you any
\nhealth problems, but you’re at risk of having children or grandchildren who either
\nhave Thalassaemia or carry the gene. It may also mean other members of your<\/p>\n\n
biological family could be carriers too, such as parents, siblings, aunts, uncles and
\ncousins.
\nDr Rossby Awadzi, a GP trainee and author of an NHS England blog on inherited
\nblood disorders, explains. “Genes are like family recipes. You get one copy from
\nyour mum, one from your dad. And sometimes, those recipes carry differences from
\nthe standard originals. If one parent hands you a slightly misspelt recipe for making
\nhaemoglobin and the other does too, your body follows both. The result? Your
\nhaemoglobin doesn’t work as expected, or at all.”
\nIf both partners are carriers, there is a one in four (25%) chance their baby will have
\nThalassaemia. There is a two in four (50%) chance the baby will carry the gene.
\nAs a blood condition, Thalassaemia runs deep through generations.
\nNaseema, who is from Preston, has two sons. Like Reena, she had never heard of
\nThalassaemia before. “I had never met anyone with Thalassaemia in my life,” she
\nsays. “When I was pregnant with Yusuf, my eldest, we found out that my husband
\nand I were carriers of the trait.
\n“Both sets of our parents only had a vague memory of being told about
\nThalassaemia, and over the years, this information was forgotten about or not
\ndeemed important.”<\/p>\n\n
How do I find out if I am a carrier of the Thalassaemia gene?
\nYou can contact your GP practice or Sickle Cell and Thalassaemia Centre to ask if
\nthey can provide the Thalassaemia blood test.
\nReena says “Once Jovan was diagnosed, I encouraged my brothers and sisters to
\nget a blood test to see if they had it. It doesn’t get picked up in an ordinary blood test
\nso it’s important to specifically ask for a Thalassaemia blood test.”
\nKnowing if you’re a carrier as early as possible is important. It could affect your
\nfamily’s future health.
\nNaseema says, “It was only when I told my best friend about Thalassaemia that her
\nmum remembered her sister was a carrier. These conversations can help improve
\nlives.”
\nAll pregnant women and newborn babies in England are offered a test for
\nThalassaemia and other inherited conditions. But it is a good idea to know if you are
\na carrier before you decide to have a baby.
\nGenetic counselling is also an option for those considering having children. For
\nReena, this is one of the most important things you can do. She says: “If you do find
\nyou carry the gene, at least you’ve got options available to you so you can make
\ninformed choices, such as IVF where they can remove the defective genes.”<\/p>\n\n
Encouraging family members who may be thinking of having children to get the
\nblood test or ask for genetic counselling may make a big difference to their
\nwellbeing.
\nDr Rossby explains: “Knowing now is kinder than reacting later. Once pregnancy
\nbegins, the clock ticks faster, emotions run deeper, and decisions become heavier.
\nGenetic counselling should clear up myths, give real options, and remind people that
\nknowledge is power, not punishment.”<\/p>\n\n
Why giving blood is important to help people with Thalassaemia give?
\nBlood donations are vital in helping those who need regular transfusions. They
\nusually take 5-10 minutes and one blood donation can save 3 lives.
\nDonating blood is safe and the major religions in the UK support blood and organ
\ndonation.
\nNaseema’s son has benefitted from 138 blood transfusions in his nine years. She
\nadds: “If there was a way I could single-handedly thank every single person who has
\never donated blood that Yusuf has received, I would. Your blood is literally the
\nreason why my son stayed alive for another three weeks.”<\/p>\n\n
What can I do to help?
\nThere are several ways you can help your family and people with Thalassaemia:
\n1. Give blood
\nDid you know that 3% of blood donors are from a South Asian background?
\nThalassaemia patients who need regular blood transfusions need blood that is
\nclosely matched to their own. Find out more and become a blood donor via
\nthe NHS Give Blood app or at www.blood.co.uk
\n2. Get tested
\nGetting tested for the Thalassaemia trait will give you important knowledge
\nabout your heritage and your family’s health. Contact your GP practice or
\nSickle Cell and Thalassaemia Centre to see if they can offer free NHS testing
\nfor the trait via a simple blood test.
\n3. Spread the word
\nTell your family, friends about Thalassemia. Tell them that it’s important for all
\nethnicities to give blood to save lives. Tell them that there is a free blood test
\navailable, along with screening services for pregnant women and newborns.<\/p>","image":"https:\/\/mmo.aiircdn.com\/241\/68964ab86c0d9.jpg","author":{"name":"Qaisar Mahmood"},"_mobile_inapp_url":"https:\/\/www.radiosangam.co.uk\/_app_pages\/stations\/3457\/blogs\/posts\/81800"}]}