Feature image from WEHEARIT (Apologies for the terrible spelling)
I know the feeling. A good friend is sick and I want to be there for them. I’m interested in their problems but their condition doesn’t quite make sense to me. I’m not sure how to ask the right questions without offending them. So instead I don’t ask. I pretend I understand, nod my head and try to say positive things. But all the while I’m thinking, it doesn’t sound too bad.
Well, my friends were brave enough to ask the questions your friend might be holding back. Here is one of our most honest conversations about ITP and how it affects patient lives. It is also a wonderful insight into how others perceive ITP. The answers to 12 questions your friends might be too scared to ask.
Q. Is ITP the same thing or similar to the disease that the heir to the Russian throne who was killed by the Bolsheviks, Alexei Nikolaevich, had? I think he had haemophilia?
A. ITP is kind of similar to haemophilia, but at the same time very different. While haemophilia is a hereditary disease, ITP is an autoimmune disorder. Haemophilia is quite rare and will most likely affect men as it is associated with the Y chromosome. ITP is more prevalent in women.
More people have ITP and it is overall more responsive to treatments, making ITP an easier disorder to live with day to day – but still just as dangerous in emergencies and accidents.
Q. I understand that ITP has something to do with bruising. Bruising doesn’t seem that bad. I bruise every time I bang my shin against the coffee table. What’s the big deal?
A. While everyone gets bruises when they bang their knee, people with ITP can get bruises from clothing, jewellery, shoes, or for no reason at all, which is called spontaneous haemorrhage. These little spontaneous bruises can occur anywhere from their legs and arms to their stomach and brain. Spontaneous haemorrhage is probably my biggest fear because I can’t prevent it and wouldn’t know about it until it was too late.
People with ITP have more severe bruises, more often. Bruises take time and energy to heal while also hurting a lot. I also think bruising is a waste of blood.
Q. Have you ever had a social worker ask if your husband is beating you up because of the bruising?
A. Luckily no, but I do know it is more common for parents of ITP children to be questioned by strangers, teachers and other parents about how they are treating their child.
Q. You don’t look that sick. Do you die from it? (I hate this question but I have to completely honest, I think it every time I see you. I can’t understand how you can be so close to sudden death or stroke and still look so fab).
A. I know! I guess I like to compare it to having diabetes (sorry if you have diabetes and find this insulting) Most of the time you are alright and can manage the condition well, but when things go bad, they get fucked up real fast! Day to day you need to be aware of it. You need to live with a high level of self-care.
ITP can get out of control quickly and can complicate other problems such as a cold, flu, pregnancy or other illness.
Yes, people do die from ITP, but like many autoimmune disorders ITP is rarely sighted as the single cause of death. People with ITP die from and injury complicated by ITP or and illness complicated by ITP. People with ITP die from things that wouldn’t kill healthy people.
Q. Why does it happen? It’s not fair.
A. There is no conclusive answer to why ITP exists. It happened because our immune system starts to destroy our blood instead of targeting an illness or infection. There are many theories about what triggers ITP, from infection, virus, a huge shock or just a predisposition that develops over time. Mostly, I think it’s chance. All autoimmune illness is pretty unfair.
Q. This is outrageous that something like this even exists. Are there people raising money and investing it in scientific studies. How close are they to finding a cure? Will it be available in your lifetime or are you essentially stuffed?
A. There are lots of people raising money and researching causes and cures of ITP, but they are doing so by researching autoimmune disorders in general. Australia is leading the way with ITP research by setting up the first international register of ITP patients to collect and analyse huge amounts of data for the first time!
I doubt I will see a definitive cure for ITP that is supported by medical science. I am a big believer in the diet and lifestyle cure, but there has been little research in that department.
Q. Will your children definitely get it if you have it? If so, would you have a child anyway and how would you deal with the responsibility of passing ITP onto your child?
A. No, they won’t. My children will have the same chance of getting ITP as any other baby. I do know a couple of mothers and children who both have ITP, but there is still no indication that autoimmune disorders are passed down genetically.
It is a possibility that in the days after my child is born, and still contains traces of my blood, it will have ITP. But this does not always happen. The majority of ITP mothers have perfectly healthy babies.
If my child is born with ITP, the ITP will probably last until it begins its own blood production and removes my antibodies from its system.
Q. It’s not contagious is it?
A. No. You could make black sausage from my blood, eat it for dinner and still not get ITP.
Q. Is there significant pain involved with ITP or with the treatment? What does it really feel like?
In terms of ITP, everyone is different. I am sometimes sore all over, feel really tired or are unable to concentrate. The bruises take a long time to heal and often hurt a lot.
I have not had every treatment available so I couldn’t speak for all treatments. There are many side effects to ITP treatments that alter your way of life. For me, I have experienced insomnia, anxiety, weight gain, fatigue and sadness.
Q. How does it impact you in a day-to-day sense?
Day to day I would say ITP is not that bad. When I think of what other people go through each day I am grateful. For me, the impact of ITP on my daily life is more about fear, annoyance and constantly being ready for things to go to hell! Living like I am well, while never forgetting that I am sick.
Q. What do you have to do that other people don’t have to do?
A. I suppose the biggest inconvenience is that I go to the doctor a lot – once every two to three weeks for blood tests and check ups. It takes up a huge amount of time from your day and can really effect work. I take medication every day and eat differently to how I used to before ITP.
I also have to explain ITP a lot, which I don’t think other people have to do.
Q. Are there things you are unable to do?
There is no blanket rule about what people with ITP can’t do. It is all about weighing up the risk at the time.
When we are doing well, we can basically do anything. But the next week things could fall and we can’t leave the hospital (or a certain radius around the hospital) until we are better.
The confusing thing for people around us it that what we can and can’t do, changes all the time depending on our health. For example, one week we may be able to play a contact sport and the next week we have to sit on the sideline. That can be hard for others to understand.
That’s all I have for now!