Hello! Welcome to Cathy's science blog about haemophilia. I have included a list of posts I have made for reference. (These are in reading order.)

• Causes/inheritance
• Symptoms/signs
• Diagnosis
• Treatments
• Effects
• Bibliography

Labels: haemophilia, index

Dr Smith asked me about my blog today. He asked if it helped me understand my disease better. I think it really did. Sitting down and writing about it… it helped me think about what it’s like having haemophilia, and what my parents must be going through.

I mean, they have to make sure I stay away from certain medications like: aspirin, salicylates, ibuprofen, and other nonsteroidal anti-inflammatory drugs. They have to check all the medication they buy for me, in case it’s one of the drugs I have to avoid because it increases the amount of bleeding that occurs when I injure myself. And they had to learn how to administer infusions, in case I needed them at home. Before they had me, my parents had other people give them their injections. It must have been especially difficult for mum. She doesn’t like the sight of blood. It makes her feel queasy. Luckily dad is okay with it. He’s the only who does it most of the time, too, since mum’s hand trembles a lot when she’s holding the needle. Dad and I decided that it would be better to let him handle the actual administering of my infusions.

Herbs like gingko, ginger, garlic, ginseng, horse chestnut, turmeric and white willow can increase bleeding in internal/external bleeding cases. So I have to be careful when I eat and I have to make sure that there isn’t any trace of those herbs. It’s troublesome at school when we have shared lunches and people bring in homemade food. Most of the time they have no idea what ingredients are in it, so I can’t eat it, just in case it does.

A photo of some ginger.

A photo of turmeric powder.

I can’t play rough contact sports like football or wrestling, because of the bruising and bleeding risk involved. But my parents suggested I take up swimming, so that I could still stay fit despite being unable to participate in most sports. Swimming exercises all the muscles groups without straining my joints. So I attend classes twice a week. It’s actually pretty fun. The other people in my class were a little nervous when they found out I have haemophilia. They were scared that I would start bleeding in the pool. But I didn’t bleed at all during any of the lessons. That pretty much convinced them I was 100% safe and non-contagious, haha!

I don’t have a part time job yet. Mum says that if I do start looking for openings, I should try retail, because it doesn’t involve a lot of strenuous work. But I don’t really like the idea of being a cashier. It sounds a little dull, don’t you think?

So… yeah… I think I have a good life. I can go to school like other people. I just have to be careful not to injure myself. I can manage my haemophilia rather well with the help of my parents. I’m just like any other person you would see in the street. I’m not so different, after all!

Labels: effects, family, friends, haemophilia, life

It’s nearly time for me to go to sleep, blog. It’s been a pretty exhausting day, especially with the incident in art. Mum was pretty angry about it when she found out. She said that I should be more conscious of my ‘fragile’ health. I don’t think she trusts me around sharp objects. She probably thinks I don’t know how to look after myself. But I do know how! I had to learn because I couldn’t keep going home or to the hospital for infusions. I can look after myself! Mum really needs to stop treating me like a baby. She probably means well, but I really don’t need her to fuss over me anymore. It’s humiliating, especially when she does it in public. Ugh!

In case you readers didn’t know, I get injections of artificial clotting factor when I bleed, because my blood doesn’t have enough to clot properly. I get injections of factor VIII, because that’s what I’m lacking due to my haemophilia A. I heard that haemophiliacs with type B get infusions of factor XI when they bleed.

I remember getting my first injection. I was pretty scared (I was only five or six years old). All I could remember was seeing the needle coming closer and closer. I think I cried quite a bit. Needles don’t really faze me nowadays though. I’m just so accustomed to seeing (and being jabbed) by them. It’s natural for me. I’m pretty sure it’s a relief for my parents too. They probably got sick of my hysterics.

I don’t have many injections these days, because I know how to avoid injuring myself. I used to have quite a few when I was little, because I hurt myself so often. But now that I’m older, I know how to look after myself, so I don’t need them as much.

Mum says I’m lucky, because I only have a moderate case of haemophilia. She said that people with severe cases usually need several injections on a regular basis. I guess I agree with her. I already have enough as it is!

I remember when my parents were talking about other treatment methods, besides my injections. The doctor at the hospital said that they could give me medications like desmopressin (DDAVP) to help my body raise its own levels of factor VII, or antifibrinolytic drugs (such as tranexamic acid or aminocaproic acid) to prevent my blood clots from breaking down. I think they decided that getting clotting factor therapy (a fancy word for getting injections of factor VIII) was sufficient at that stage. They didn’t want to be pumping me with tablets, and it would probably cost a lot of money to get the mediation.

Labels: haemophilia, treatment

Hello monsieur blog! It’s me again. I just got back from school.

We had PE today. I had to sit out again because we were playing dodge ball. It looks really fun, but I couldn’t join in because of my disease. I want to run around and I want to play rough like the others, but I can’t because of my ‘delicate’ health. It makes me feel different. Out of place. I’m okay most of the time because we have classes, but during PE… I feel so alienated from everyone. My classmates don’t notice though. At the start of the year, they gave me weird looks when I just watched from the sidelines. But they got used to me sitting out, and never gave it a second thought. I know they don’t mean to be spiteful but I can’t help but feel hurt that they forgot about my existence so quickly.

Anyway… During art, I cut my finger.

The dreaded carving tools.

We were lino printing, and I sliced my finger with the carving tool. It really hurt, but what really concerned me is that I wouldn’t stop bleeding. Everyone was staring at me with revulsion and fascination. It was so embarrassing! I’m sure my face turned 50 different shades of red. Especially since the substitute teacher was going crazy. She was on the verge of hyperventilating. I tried to calm her down, tell her that this was normal for me, that I just needed an infusion and I would be okay. But she didn’t believe me. I was just standing there while she ran around being useless. I could hear people snickering quietly, and whispering to each other how I was always causing so much drama. It spread like ripples across water, and then the whole class was laughing at me. I nearly cried. I knew my mum was going to be furious that I hadn’t been careful. But now people were laughing at me at something I couldn’t control! It was so stupid. I didn’t choose to have haemophilia. It wasn’t my fault that I bled continuously if I cut myself. I would’ve given them a right piece of my mind, but I was too busy trying to calm my teacher down (albeit in vain). I eventually convinced her to let me go up to the front office and get an infusion. But I’ll never forget the laughter that followed me on the way out.

Prolonged bleeding is a sign of haemophilia, if you haven’t already picked up on that. I’m sure you curious readers would like to know what other symptoms are, right? Well, some other ones include:
• Easy bruising
• Abrupt bleeding from the nose or mouth
• Spontaneous external bleeding (called ‘bleeds’)
• Internal bleeding
• Joint bleeding (hemarthrosis)
• Blood present in urine (hematura)
• Blood present in stools
• Fever, skin discolouration and pain accompanied with swelling under skin/between muscles

I can’t stop thinking about the art class incident. I heard the names the things they called me. Bloody Zoë, Little Red, Wannabe Emo. I don’t understand. Why did they do that? Have they been doing it all this time? I mean… I’m used to them just ignoring me. But I’ve never heard them call me names. Not once.

It’s really nice that I have you to talk to. I don’t really have anyone to talk to at school. I think they’re afraid of me, or something. They know that I have haemophilia. It’s not contagious. I can’t spread it. But they still handle me like I’m a bomb that’s about to blow them all sky high. They’re all friendly enough, but they don’t like being near me. I can tell by their expressions – that half-smile, half-grimace that screams ‘I don’t want to talk to you but I will because I’m nice.’

Labels: haemophilia, symptoms

It’s Zoë with a quick update! I have to go to school soon, but Dr Smith said it’s good to post regularly.

Mum was looking through some old photos of me with Aunty Sue during breakfast. Most people would be ashamed if their mum did this, but I’m okay with it. Honestly! I’m happy I have baby photos. I was in hospital a lot as a baby because of my haemophilia, and my dad never really had the chance to take many happy snaps.

Mum told Aunty Sue how I had to be tested for haemophilia because of our family history. She said that she knew it was more than likely I would have it, but she still hoped that I would be spared. I had to have a complete blood test after I was born, because mum didn’t get a prenatal test. The results came back positive (obviously) for haemophilia. Mum said she was still shocked about it, even though she expected it. She had considered getting other tests done to be absolutely sure, like a prothrombin time (PT) or a partial thromboplastin time (PTT) or even getting my factor VIII and IX levels checked. But she knew that no matter what testing got done, it wouldn’t change the fact that I had haemophilia.

Oh! I have to go now. I’ll be back soon blog, with a meatier post.

Labels: diagnosis, haemophilia

Hello. My name is Zoë. I’m 16 years old, and I’m in year 10! I’m 156 centimetres tall, and I’m average in appearance. I’m not very good at sports. But I’m really good with words. My friends tell me I’m a walking thesaurus! Quaint. Exuberant. Animosity. See?

The reason I started this blog is because Dr Smith told me it would be ‘a most excellent idea’. Dr Smith is really weird because he says things like ‘jolly good!’ and ‘that’s a most excellent idea’! But he’s really knowledgeable in his field of work (and he likes the Lord of the Rings).

Anyway! Dr Smith said that keeping a blog would help me immensely. It would help me understand my condition, and it would be beneficial to record my feelings and thoughts. He said that lots of other people did it too, and it was more than likely someone else would have a similar blog to mine.

So here I am, 161 words into my very first post! Oh! Do you want to know a secret? It’s really important that you don’t tell anyone. Okay. Ready?

I know what you’re thinking.

Okay. Not really.

BUT, I know that you probably won’t have any idea what haemophilia is. Am I right? (Of course I am). I grew up with this disease, so I know a reasonable amount about it.

Haemophilia is a recessive X-linked disease which hinders the blood’s ability to clot. There are three different types of this condition: haemophilia A, haemophilia B and haemophilia C.

I have haemophilia A, which is the most common type. People with haemophilia A have lowered levels (or completely absent from) a blood clotting factor called factor VIII. It’s the same for people with haemophilia B, but the clotting factor affected is factor XI.

Do you know what a sex-linked disease is, audience? Well, haemophilia is inherited on the lower half of the X chromosome. That means that males inherit only one gene for it. If that gene is defective (i.e. recessive) then he will have the disease! Girls receive two genes, so we won’t have the disease unless we get two recessive genes.

I inherited two recessive genes from my parents. And you guessed it! They both have haemophilia too! Take a look at my fancy punnet square:


My dad’s genotype (the types of genes present in an organism) is at the top, and my mum’s is down the left side. Can you see how they can only have haemophilic children because they both pass down their recessive gene? That’s how I inherited it!

I guess I’m unlucky because my family has a history of haemophilia. Have a look at my family tree. My great-grandparents (1 and 2) passed it down to my grandparents (3 and 4) who then passed it onto my mother (5). My father (6) also had the disease. And my brothers and I (I’m number 7 on the tree) also have the condition. It’s almost freaky how nearly all my relatives are affected!

You know what’s really weird though? That some people have sporadic (occurring for an unknown reason) cases of this disease!

You know, it’s really nice to have someone to talk to (even though you’re just an electronic interface). I don’t really have anyone to talk to at school. I think they’re afraid of me, or something. Everyone knows that I have haemophilia. It’s not contagious. I can’t spread it. But people still handle me like I’m a bomb that’s about to blow them all sky high. They’re all friendly enough, but they don’t like being near me. I can tell by their expressions – that half-smile, half-grimace that screams ‘I don’t want to talk to you but I will because I’m nice.’

Labels: causes, haemophilia, inheritance

An online copy.

All About Hemophilia / Haemophilia N.d., Medical News Today, accessed 18 March 2012, <http://www.medicalnewstoday.com/info/hemophilia/causes-of-hemophilia.php>.

Campaign TB, 2010, Newsline Health Focus: Haemophilia - April 2010, online video, 2 Aug 2010, accessed 21 March 2012, <http://www.youtube.com/watch?v=kfhKPGQZJ7I>.

Carving tools, 2011, photograph, Iro Iro Crafts, accessed 21 March 2012, <http://iroirocrafts.wordpress.com/2011/12/10/diy-lino-printing/>.

Ginger, 2012, photograph, BBC, accessed 22 March 2012, <http://www.bbc.co.uk/food/images/food_16x9_608/foods/g/ginger_16x9.jpg>.

Haemophilia – Causes & Symptoms N.d., Healthtalk, accessed 18 March 2012, <http://healthtalk.info/blood-disorders/haemophilia-causes-symptoms/98/>.

Haemophilia - Symptoms N.d., NHS, accessed 20 March 2012, <http://www.nhs.uk/Conditions/Haemophilia/Pages/Symptoms.aspx>.

Haemophilia A N.d., Virtual Medical Centre, accessed 18 March 2012, <http://www.virtualmedicalcentre.com/diseases.asp?did=62#Statistics>.

Haemophilia N.d., The Haemophilia Society, accessed 09 March 2012, <http://www.haemophilia.org.uk/information/Bleeding+Disorders/Haemophilia>.

Haemophilia Symptoms N.d., News Medical, accessed 20 March 2012, <http://www.news-medical.net/health/Haemophilia-Symptoms.aspx>.

Hemophilia A Treatment & Management N.d., Medscape Reference, accessed 22 March 2012, <http://emedicine.medscape.com/article/779322-treatment>.

'Hemophilia' n.d., in Britannica Online, accessed 21 March 2012, <http://www.britannica.com/EBchecked/topic/261012/hemophilia>.

Hemophilia N.d., University of Maryland Medical Centre, accessed 21 March 2012, <http://www.umm.edu/altmed/articles/hemophilia-000076.htm>.

Macnair, T February 2009, Haemophilia, BBC - Health, accessed 09 March 2012, <http://www.bbc.co.uk/health/physical_health/conditions/haemophilia1.shtml>.

Signs and Symptoms N.d., Kids Health, accessed 20 March 2012, <http://kidshealth.org/parent/medical/heart/hemophilia.html#>.

Turmeric powder, 2012, photograph, Mercola, accessed 22 March 2012, <http://media.mercola.com/assets/images/organic-india/turmeric-powder.jpg>.

Welcome, 2011, illustration, Hush-star, accessed 22 March 2012, <http://2.bp.blogspot.com/-QIx-
N3yGNRc/Tox1MmYN_XI/AAAAAAAAAXk/aUmt5jpbxDk/s320/welcome4.png>.

What are inhibitors? N.d., Haemophilia Care, accessed 22 March 2012, <http://www.haemophiliacare.co.uk/what-are-inhibitors-teenagers.html>.

Labels: bibliography, haemophilia