WTF is Aplastic Anaemia?

January 31st         update          Save a life today

aplasticbonemarrow

Aplastic anaemia is a life-threatening disease in which our bone marrow stops producing new blood cells at the same rate, resulting in deficits of all blood cell types. White blood cells fight germs and platelets help blood to clot. Without these, the body is at risk for infection and uncontrolled bleeding. Whilst not cancer, its effects on patients and families are equally devastating. The treatment is harrowing and resembles that of cancer patients.

 

What causes aplastic anaemia?

In the majority of cases aplastic anaemia is an acquired disorder that develops at some stage in the person’s life; it is usually not inherited nor is it present at birth. Several potential triggers for the development of aplastic anaemia have been identified, inclduing:

  • exposure to certain drugs – these include certain drugs to treat arthritis or an over active thyroid, some drugs used in psychiatry and a few antibiotics. The risk of aplastic anaemia resulting from taking these drugs is very small.
  • exposure to certain chemicals – there is a long list of chemicals which have been suspected of causing aplastic anaemia. The link between these chemicals and the incidence of aplastic anaemia is often very weak.
  • viruses – some patients diagnosed with aplastic anaemia have suffered a virus in the weeks prior to their diagnosis.
  • radiation exposure.

In many cases, the cause of aplastic anaemia remains unknown and with children it is often impossible to prove what caused the aplastic anaemia.

 

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What are the symptoms of aplastic anaemia?

In aplastic anaemia sufferers, their quantity of each blood cell type is much lower than normal. Fewer white blood cells will bring on unexplained infections. Fewer platelets bring about unexpected bleeding and fewer red blood cells cause fatigue. Other symptoms include:

  • Easy, unexplained bruising
  • Weakness, fatigue and tiredness
  • Fever
  • Nosebleeds and bleeding gums
  • Pale skin
  • Prolonged bleeding from cuts
  • Rapid heart rate
  • Skin rashes

 

How is aplastic anaemia treated?

Treatment of aplastic anaemia can be lengthy and costly and because the disease is rare sufferers may not receive a high quality coordinated treatment or care. It may take a long time to get a diagnosis, all the while the patient is waiting not knowing what is going wrong with their body.

Treatment depends on several factors including the cause of the disease (if this can be identified), its severity, the person’s age and the general health of the patient. A bone marrow transplant from a healthy, matching donor will give Henry and other sufferers the best chance of a permanent recovery; however, Henry’s siblings ARE NOT a match and there has been no match found on the bone marrow registers, therefore Henry must undertake regular ‘supportive therapies’ by way of transfusions. For aplastic anaemia sufferers, the most common transfusions are red blood cell transfusion and platelet transfusion. See here for details of Henry’s current treatments.

 

How many peole have aplastic anaemia?

  • There are thought to be between 1 and 4 sufferers in every million people.
  • Just 125 people are diagnosed in the UK each year.
  • Those aged 10-20, and the elderly, are most affected.

 

Find out more about Aplastic Anaemia and the work of the AAT here.

AAT logo

To read more about fundraising efforts on Henry’s behalf, or of the aplastic anaemia trust and Anthony Nolan Trust, please visit our here.

Henry’s story thus

January 31st

Aplastic Anaemia Trust          #ourHenry          Anthony Nolan

Thanks for looking in again on Henry as he continues his battle against Aplastic Anaemia – a life-threatening bone marrow disorder.

A mini-chronicle of Henry’s school years (in better health)

Henry was diagnosed with Aplastic Anaemia, a serious bone marrow and blood disorder affecting just one-in-a-million people, in late October.

Since then, Henry has not been living the life of an ordinary 17 year old … far from it! He has spent over one month in the last three cooped on a first-name basis with the staff at Rpyal Surrey County Hospital, notably their Hascombe Children’s Ward where he has been hooked up to all manner of machines and drips being battered, bruised, but not beaten. The rest of the time he has spent at home, missing months of crucial schooling – not forgetting the social element all 17 year-olds endure. Despite his ordeal, you will rarely see him without a smile on his face or without a joke to tell. 

The only hope for any return to his prior quality of life is a stem cell (aka bone marrow) transplant; however, even this is no guarantee of recovery. Henry’s siblings – the most likely hope of a medical match – WERE NOT a match. After a painstaking wait, however, and a trawl of the world’s bone marrow databases, a bone marrow match was found two weeks ago in Germany on the DKMS database. Henry must now wait for DKMS, Klaus and Klaus’s family, and the NHS to sort out the logistics to enable Henry to get what could prove to be life-saving treatment.

Henry in November

As well as having to contend with this life-altering news, Henry has also had to fight off meningitis, mouth ulcers, severe fatigue, multiple bouts of hives and several other infections that he has already acquired as a result of his lowered immune system. Henry’s body has even been rejecting platelets transfused into his body to help him fight such conditions. He has still found time though to apply for university and he has two offers in the bag. The expectation is that after a two-year ordeal involving hundreds of transfusions, a stem cell transplant and chemotherapy that Henry can move on with his life and join his friends and family on the regular version of the ‘game of life’.

Henry’s teachers hope that you are able to support their mission to raise £15’000 for two charities, the Aplastic Anaemia Trust (@AplasticAnaemia) and Anthony Nolan (@AnthonyNolan). They HAD set their target at £10’000 but due to everybody’s generosity, they are already over halfway there. Both these charities conduct ground-breaking research into finding cures and treatments for blood and bone marrow disorders, including Aplastic Anaemia, Leukaemia, Myeloma and Lymphoma, and both charities also offer huge support – practically and emotionally – to sufferers and their families.

 

Read more about the forthcoming Jazzathon and Charity Jazz Night @ Farnham Castle being held in Henry’s name and in aid of those two amazing charities.

Read more about Henry, these – and even more – charitable events, and how to donate to those worthy causes, here.

Thank you

#ourHenry

University offers!

January 30th          update          #UCAS

Henry has received two University offers today: one in South Wales and one from the Midlands.

What an utterly monumental achievement for Henry given his recent travails, and given that he missed about one-third of Year 11 with other (as we are aware) unrelated ailments.

September 2020, which is Henry’s likely University start date, will see a new phase commencing in a young man’s life. 

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Please read Henry’s story here.

#ourHenry

Thank you.

Henry’s chosen charities

January 29th          #theAAT          #AnthonyNolan

Aplastic Anaemia Trust

Aplastic anaemia is a life-threatening disease. Whilst not cancer, its effects on patients and families are equally devastating. The treatment is harrowing and resembles that of cancer patients. Treatment can be lengthy and costly and because the disease is rare aplastic anaemia sufferers may not receive a high quality coordinated treatment or care. It may take a long time to get a diagnosis, all the while the patient is waiting not knowing what is going wrong with their body. Aplastic Anaemia Trust rely on donations from people and organisations to fund their vital work. They would not exist without such generosity. Any donation you can give will go towards supporting everyone affected by aplastic anaemia – both adult and child – now and in the future.​

Find out more about Aplastic Anaemia and the work of the AAT here.

AAT logo

 

Anthony Nolan Trust

Every day, Anthony Nolan Trust matches incredible individuals willing to donate their blood stem cells or bone marrow to people with blood cancer and blood disorders who desperately need lifesaving transplants. It began back in 1974 when Shirley Nolan set up the world’s first bone marrow register to help find her three-year-old son a match. Now, over 40 years later, Anthony Nolan help over 1000 people every year find a life-saving match through their register. They also conduct world-class research into stem cell matching and transplants, so they can make sure every person in need gets the best possible treatment.

To find out how you can be on the bone marrow register and help people in their darkest hour, go to the Anthony Nolan website.

anthony-nolan

 

To read more about fundraising efforts on Henry’s behalf, or to donate to these two incredible charities, please visit our Giving page.

A donor has been FOUND!

January 29th         update          Save a life today

Praise Jebus!

For those that missed the news on 19th January, a bone marrow match has been found for Henry.

Repeat … (!) … a bone marrow match HAS BEEN FOUND!

In Germany!

Henry tucks into some Dr Oetker Ristorante to show his thanks.

Henry will be booked into the Royal Marsden Hospital as an in-patient in late February or early March for a stem cell transplant from the 22-year-old donor, whom we call ‘Klaus’. In the meantime Henry is stable in his Cranleigh home being waited on by his mother who is using an annual supply of wool each week.

Thank you for your continued support!

DKMS

Help delete blood cancer; visit DKMS and Anthony Nolan find out how you can save a life.

Henry – an update

January 28th          update          #A-Levels

Henry visited Royal Surrey again today and, in a rare moment of weakness, Henry’s mother mistakenly accepted a phone call from Mr Place who was enquiring about his whereabouts and where-for-alls. There we all are worrying about Henry, but it’s Mrs Young who’s really having the harder time of it.

Anyway … NEWS JUST IN!

Henry WILL NOT be sitting his A-Levels this year. He will be deferring for a year, and thus also any potential university place he is offered.

Before … and After

The HUGE decision now for Henry is whether to re-sit Year 13 at More House School, study all for all his missed exams from home and/or with tutors, or to undertake a Foundation degree in place of A-Levels. Given his altruistic and sporting nature, and his love of all things outdoor, hopefully whatever he chooses can be combined with a return to elite-level kayaking and some travel and charity work … as well as a return to tiptop health, of course.

Read more about Henry’s charities: Aplastic Anaemia Trust and Anthony Nolan.