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thalassemiagb · 3 years
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The NHS blood test tube shortage:
At the moment the NHS are experiencing a shortage of blood test tubes, therefore they are restricting the amount of blood tests conducted.
There is no need for us to be overly concerned as clinicians are screening to ensure that those who need blood tests do receive them such as members of the uk thalassemic community.
This was something i would like to make everyone aware of but not try to create an unnecessary panic. Attached is a copy of a text from a doctors surgery.
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thalassemiagb · 3 years
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Tell me you have thalassemia minor without telling me you have thalassemia minor. Ill go first.
My doctor: oh. It only affects you having children.
Also my doctor: tests my blood once every 3 months and often has to give me prescriptions.
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thalassemiagb · 3 years
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Thalassemia is a genetic condition and causes many of us to have to be very careful with family planning so, here are some Birth Control methods from my own appointment to get contraception:
- the combined pill/injection is not advised due to the blood clot risk.
- copper coils/all coil types are not advised due to the increased risk of menorrhagia (abnormally heavy bleeding)
- daily pills forms of contraception are not reccomended due to many thalassemics struggling to take the pill at the same time everyday.
- progesterone only injections/implants have been deemed safe for thalassemics. (I have the injection and have been fine)
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thalassemiagb · 3 years
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Many with Thalassemia are blood transfusion dependent. Here are my reasons to give blood:
- it burns calories. Donating one pint of blood can burn 650 calories. It should be never be used as a means to lose weight but does burn calories.
- it improves cardiovascular health
- it helps curb obesity
- it reduces cancer risks
- it reduces damage to the live and improves its health.
- it reduces the risks if hemochromatosis (having too much iron)
- it simulates your red blood cell production
- ensures that people who are blood transfusion dependent have access to blood.
- one pint of blood can save 3 lives
- a person is in need of blood once every 2 seconds
- there is research to suggest that people who frequently donate blood will live longer than those who don’t
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thalassemiagb · 3 years
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My biggest pandemic flex is that im fully vaccinated. My BTm pushed me up on the list to get it - i am classed as moderately vulnerable and so i am thankful i have been vaccinated.
If you can, get the vaccine! Protect yourself and your loved ones.
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thalassemiagb · 3 years
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New India Variant:
Please be keeping vigilant and safe with this new variant of Covid. If you are able to get the vaccine! I have had both injections and i implore you to do likewise and keep yourself safe!
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thalassemiagb · 3 years
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The importance of blood donation.
Due to the pandemic the amount of available blood for transfusions has decreased dramatically. Many thalassemics are dependent on this blood to survive. Many thals have noticed that their transfusion amounts has lessened to make sure that there is enough blood for everyone who needs it.
Please donate blood. It is a selfless act that will save many lives. You can still donate blood in the pandemic. Even some thal minors can donate blood (dependent on where you live and haemoglobin levels), you just need to blood checked before hand.
Donate and save a life.
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thalassemiagb · 3 years
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Today is world thalassemia day. 8th of may 2021.
To celebrate im asking for others to tell their journey with thal. Ill start:
No one knew i had beta thal minor until i was sent to hospital with glandular fever. It took months of investigations into my blood to figure out what was wrong with me. Despite having the condition for over a year i still feel in the dark about the condition. To confess i struggle with fatigue still after all this time since i got glandular fever (over 18 months) and people seem to expect me to bounce back to how k was before, finding out about my health problems has changed me as a person. Im working to try and increase awareness about thalassemia.
Thank you for reading. 😊
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thalassemiagb · 3 years
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Having thalassmia minor means having days where you want to create content for your blog and instagram but dont have the energy to do so. Really relating to that spoonie explanation of fatigue.
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thalassemiagb · 3 years
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The fact ive been too fatigued to post in a while speaks for itself with thalassemia minor. ✌️ be staying safe with this pandemic thal pals!
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thalassemiagb · 3 years
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If you have alpha/beta thalssemia mayor/minor/intermedia you should have some form of medical id on you at all times. You can get bracelets, necklaces and identification cards to keep in your wallet/purse. These can help get you the right treatments in a medical emergency and prevent medical mishaps.
Ill add a link to a bracelet that i am personally going to purchase and well as some information on who should have medical identification on them.
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thalassemiagb · 3 years
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For thalasemics dependent on blood transfusions the pandemic has been a very turbulent time. In England, transfusion dependent thalassemics (thalassemia mayor and thalassemia minor) have had to ‘shield’ (stay at home and not go out at all, other than for essentials) throughout the three lockdowns. Despite this shielding mandate, they have had to go to the hospital regularly (some every 15-20 days) where they are most likely to contract Covid-19.
To add to this, blood donations have dropped with the pandemic. There has been a decline in blood drives and awareness that you can still donate with the pandemic. If you are able to donate, i implore you too. I would if i could, but my blood condition doesn’t allow me to qualify. You can save a life.
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thalassemiagb · 3 years
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Foods high in natural antioxidants are great for a thalassemic diet. These include things such as berries and fruits. Not to mention some of these foods are also high in other vitamins such a vitamin c.
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thalassemiagb · 3 years
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Fun Thalassemia fact: the majority if thalassemics have some degree of natural immunity or resistance to malaria. This is due to the disease struggling to take a hold in our blood streams due to abnormal red blood cells.
It is a evolutionary genetic mutation, if you want to think positively kind of like a super power for us!
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thalassemiagb · 3 years
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Normal people: midnight clothes or makeup hauls
Me, someone with BTm: midnight vitamin hauls
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thalassemiagb · 3 years
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My friend send me this earlier. I have just started to try and raise awareness for Thalassemia in the uk, and for english speakers. This is something that has stuck with me. My beta thalassemia minor (btm) was undiagnosed until i turned 17. I had another illness (a virus) that made me very poorly and it took me months longer than normal to recover from it. During my recovery period, I experienced months of investigations into unexplained anemia until i was diagnosed with BTM. Through my recovery period i lost a lot of friends, people were simply bored of me and my illnesses. It opened my eyes to who was a true friend and who wasn’t.
You are more than your illnesses, no matter how severe they are.
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thalassemiagb · 3 years
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Thalassemia is the name of a group of genetic conditions that affect haemoglobin. Thalassemia affects both the Alpha and Beta haemoglobin genes. There are three types of Thalassemia for each affected gene, major, intermedia and minor. Major Thalassemia sufferers have the most serious and life threatening form of the condition, where they require frequent blood transfusions to stay alive. Intermedia Thalassemia sufferers do not require as frequent blood transfusions but they are still needed. Minor sufferers (like myself) suffer from mild anemia or can be asymptomatic, this is the least life threatening form of the condition. Thalassemia affects lots of aspects of a persons life such as, their fertility, gallstones, illness recovery time and covid - 19.
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