About this article
Article Category: Case Study
Published Online: Jul 04, 2022
Page range: 85 - 95
DOI: https://doi.org/10.2478/jhp-2022-0011
Keywords
© 2022 Simon Fletcher, published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
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| She [mother] took me to the GP, and it was the GP that said, “I think we should test her for haemophilia.” | |
| I don’t know how the GP… I don’t know if it happened that my mum said, “Oh, I do have haemophilia in my family but they said it couldn’t be that,” and whether they just thought we’ve got to rule it out. I don’t know how it happened, really. But I just know that the GP was the one who sent my mum and me to the hospital to get the blood tests done. | |
| I don’t know what the things were like [all those years ago], but perhaps they could have thought at the very least that maybe I was a carrier and would still have… just maybe have low levels but not enough to make me a haemophiliac. | |
| I’ve found they’ve been like, “Oh – really?” and “I’ve never had a woman with haemophilia.” The attitude has been not necessarily that they don’t believe me, but the attitude has been, “Well, I don’t know anything about haemophilia, never had a woman with haemophilia, so I don’t know.” | |
| Well, I mean, haemophilia isn’t the only bleeding disorder, so you can’t say that the next day they wouldn’t see someone, see a woman, with a different bleeding disorder. I understand that in my situation, yes, it is quite rare. But why aren’t they… I don’t know, obviously, what goes on in their medical training and how much time they spend on different areas, but are they not taught about bleeding disorders and women with bleeding disorders and how to deal with it? | |
| It was like, ok, so they diagnosed me with that, they said what they wanted to do – they wanted to do surgery. And it was like, “Ok, but I have haemophilia A.” | |
| And he said, “Probably going to be surgery.” I said, “Right, ok. I have haemophilia A, severe,” and they were like, “Oh, right, ok.” I said, “You need to contact my centre. Or you need to speak to an on-call haematologist here. But you need to speak to someone. I’m not happy to have surgery without you having spoken to someone and have a plan in place.” | |
| When they took us aside to speak to the midwife about what to expect and everything, I said, “What about my haemophilia? Is that going to have an effect? Should I do anything different?” And she went, “Oh. I don’t know because I’ve never had a woman with haemophilia,” and it was just left at that. And it was kind of like… well, ok, it's good that you’re admitting that you don’t know, but could you find out, could you speak to someone? And instead I went home and I actually contacted my haemophilia centre myself, and obviously had to explain to them what had happened and ask them for advice or what I should do. And I just feel like I probably shouldn’t have had to do that. Something that was so upsetting at the time, why did I need to go and seek out my own medical care, my own advice and things like that? | |
| I’d say all my life me or my mum have had to advocate for me. | |
| I mean, I think one of the big things is that so many people still think that women don’t get these certain bleeding disorders, and that's probably the biggest thing. | |
| I’ve spoken to people when I’ve been doing interviews or surveys and things like that, and they’ve sort of been like, “We’re really excited to speak to you because we didn’t know that women… we didn’t know there’d be a woman with haemophilia.” So, they don’t even sort of wonder if it's out there. They don’t wonder if there's women out there with haemophilia or certain bleeding disorders. They’ve been told that there's not, so they don’t include them, I’m guessing. | |
| I’ve spoken to a lot of mums whose daughters might have haemophilia mildly or they’ve been told that they’re a carrier and they’re experiencing some symptoms, and I talk to them and they seem to have a lot of the experiences that I have in terms of heavy periods, bleeding in joints and things like that, which I can say, “Oh, well, yes. Because it's actually documented that I have haemophilia, this is what I… this is the medication that I can use, or this is what the doctor prescribed me, or this is what I do.” And they still find that helpful. | |
| And on the Friday when I’d been up to have blood tests I’d said to them I’ve got haemophilia A, severe. They were like, “Oh right, ok, yes.” And I was like, “Yes. Ok?” and they were like, “Yes, yes, that's fine. Never met a woman with haemophilia A.” | |
| I do want to go to Hemlibra, but […] it's been delayed and delayed. And that's what's prompted me to be like, “Why is there never any data on women?” I know that it's probably a lot harder to find women with haemophilia, but I don’t know… I kind of feel like is there not another way to find some data around women and these different drugs? | |
| I don’t have a lot of understanding on it [gene therapy] because it's not something that I’ve ever been approached about. I didn’t really even know anything about Hemlibra until I read that it was… it had been approved on the NHS for severe and people with inhibitors. I sort of… I think I’d sort of seen that maybe something like that was in the works, but I didn’t know that it was here, that it was an option, until it sort of was. | |
| Why are they never… When they put the feelers out for, you know, “We want to speak to men of this age, this background,” or whatever they’re looking for to include in their study, why isn’t it… why are there never feelers out for women? I know that it might be harder to find them, but can they not reach out to centres and say, “Do you have any patients with any of these conditions – or anything like that – and would they be interested in taking part?” I mean, some people wouldn’t be and that's just personal preference. They might not be suitable, whatever they’ve got as the criteria. But there must be ways to find women. But when I see studies it is like… it's asking for men. And most of the time, if I apply – when it starts involving medical treatments and things like that, it's like they’re too scared to ask. |
Interview guideThank you for agreeing to take part in this interview. Everything you tell us in this interview will be treated with complete confidence but some comments may be used in a publication, subject to your prior review – your identity will never be revealed.In this interview we want to know, as a woman, what your experience of haemophilia is, what it has been like growing up with it, and how it impacts on your day-to-day life.Are you OK to proceed and are you happy that we record the interview?
| Can you begin by telling me how old you are and a little bit about what hobbies you have? | |
| Can you tell me about your haemophilia? |
When were you diagnosed? Do you have a history of haemophilia in your family? How did your parents cope with the diagnosis? |
| Can you tell me about what it was like growing up with haemophilia? |
What was school like? Did you feel excluded because of your haemophilia? When did your periods start and how was that for you? |
| Can you recall how many bleeds you have on average? | |
| How are your joints? |
Do you have any joints that bleed more than others? How do/did you manage those bleeds? |
| What about pain? Do you have any pain now? |
How has it been over the past month?
Do you get pain every day? Is it joint-related/arthritic, or is it haemophilia-related? How does arthritic pain differ from the pain of a bleed (if applicable)? |
| What impact has having haemophiila had on you and your family? |
Have there been any negative impacts? Do you think there are any positive impacts? How worried are you about an injury? Was it difficult talking about your haemophilia to boyfriends/your spouse? |
| Do you feel that because you are a woman your care is different from that of men with haemophilia. |
In what ways? |
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How long have you been on it? Have you been on any other treatments? |
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| What treatment are you on? | |
| Have you ever had an operation in hospital? |
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| Do you have any children of your own? | |
| Have you heard about any other treatments that might be available in the future? |
What do you know about them? Do you think any of them are an option for you? If not, why not? |
| Is there anything else you would like to say or ask of me? | |
| Thank you for taking part in this interview. |
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