Why do I care so much about helping BXO sufferers?
I am getting daily hits on my blog. That makes me feel amazing. It makes me feel amazing because of the thought that perhaps I'm making a difference for people. Some days, the blog might only get one hit, but that's still one hit from one person who possibly came here wanting help for this horrible disease. It makes me feel amazing that one person out there can benefit from the knowledge I've gained whilst dealing with BXO.
I've done this sort of thing before, where I've learnt a lot about something that wasn't documented and shared my learning with others in the hope that those in my footsteps need not make the same discoveries as I have already made. The difference is, those were IT examples. This is a medical example. I have a disease, and typically, when you have a disease you turn to your doctor who points you in the direction of someone can help. The outlook may be grim, but at least you are given the feeling that the profession understands something about your disease. Be it cancer, a stroke, a heart attack or other potentially fatal illnesses, the profession understands at least something about it. BXO (or, for the purposes of this article, Lichen Sclerosus) doesn't fall into this category. The medical profession knows next to nothing about it. All they know is how to treat the symptoms, for some people. I get the feeling it's a low priority for them to understand. Resources are finite, and they need to prioritise every research effort. Lichen Sclerosus is a condition that typically resolves on its own in children, and otherwise typically affects postmenopausal women. It rarely affects men, but does so with odds of about 1 in 100,000. I'm sure this isn't a reflection of reality, but I feel like the industry takes the view "oh well, it's only postmenopausal woman, and it only affects their genitalia, so what does that matter?". Well, for one of those poor women, it matters a hell of a lot. For her partner, it matters, for her self esteem, her sense of sexiness and attractiveness, her purpose... it all matters to her. And for one of those even rarer 1 in 100,000 men, it matters a hell of a lot to us too.
Suffering from a rare disease that doesn't have a life-threatening prognosis is awful. If it were to occur all over the face, I feel like western medicine might care more. But it doesn't. It hides away on the genitalia primarily, and is therefore not talked about nor given much attention. Most people probably correct you and say "you mean multiple sclerosus?" if you used the term around them. Today, I made the mistake of forgetting how little is understood when trying to do some research on the healing stages of BXO. It's healing, which is something I've established for some time. But I'm struggling to explain the physiological reasons for why it needs to be so slow, whether it can be made faster, and ultimately, what the stages look like. I'm trying to understand something... Ultimately, I just want to know when will I be back to normal.
If you are travelling somewhere and get asked "how soon until we get there?" you need to know two things. The distance to your destination, and your speed. To know your speed, you need to know how far you have traveled over a particular period of time. When it comes to BXO, I have no idea how far from the end I am. I can roughly measure progress by looking at all the timestamped photographs I've since June 2014, which could give me a theoretical value for 'speed', but I know nothing of the end point. Also, my healing is not linear. There are patches where the skin appears far closer to normal than others, in areas that once appeared uniformly affected. Mostly, this is because the skin has been injured and the injury site has healed back to much more normal skin tissue. So, for me to predict even to a rough level of precision when I might be healed, or at least, when I might look normal again, is virtually impossible. But I also believe AN answer (maybe not THE answer, but an answer nonetheless) lies in the images I have already taken. I think I need to compare images taken over a long enough timeframe, and under identical lighting conditions, then to match the colour balances over all images. It has to be worth a try.
If you're reading this and aren't sure of the purpose of this post, I'll share it with you. It shows you that a) I am arguably more committed than anyone to discovering a way out of this awful mess we call BXO and b) that I absolutely will continue to share it on here to ensure that those following after me are not forced to make the same discoveries that I make. If it turns out that I find no way to accelerate things other than "eat healthy, drink plenty of water, get lots of sleep, exercise, avoid prolonged stress and keep the area dry" then I'll concede that on here and let you all know so you can save your money on treatments and stick to what is proven to work. If it turns out that it takes as long to resolve as it did to get as bad as it did, I'll tell you that. I don't want people under disillusions about what a recovery looks like, but....
I DON'T WANT YOU ALL THINKING THAT LICHEN SCLEROSUS HAS NO CURE AND THAT TOPICAL STEROIDS MANAGE THE SYMPTOMS BUT NEVER TREAT THE UNDERLYING CAUSE, AND THAT CIRCUMCISION IS THE ONLY CURE because that is an abbreviated conclusion formed by a group of people who didn't deem the disease important enough to research it further. I have a reason to find out what works - as good a reason as any - because my own happiness depends upon it. So if the medical industry won't, then I'll at least try.
I've done this sort of thing before, where I've learnt a lot about something that wasn't documented and shared my learning with others in the hope that those in my footsteps need not make the same discoveries as I have already made. The difference is, those were IT examples. This is a medical example. I have a disease, and typically, when you have a disease you turn to your doctor who points you in the direction of someone can help. The outlook may be grim, but at least you are given the feeling that the profession understands something about your disease. Be it cancer, a stroke, a heart attack or other potentially fatal illnesses, the profession understands at least something about it. BXO (or, for the purposes of this article, Lichen Sclerosus) doesn't fall into this category. The medical profession knows next to nothing about it. All they know is how to treat the symptoms, for some people. I get the feeling it's a low priority for them to understand. Resources are finite, and they need to prioritise every research effort. Lichen Sclerosus is a condition that typically resolves on its own in children, and otherwise typically affects postmenopausal women. It rarely affects men, but does so with odds of about 1 in 100,000. I'm sure this isn't a reflection of reality, but I feel like the industry takes the view "oh well, it's only postmenopausal woman, and it only affects their genitalia, so what does that matter?". Well, for one of those poor women, it matters a hell of a lot. For her partner, it matters, for her self esteem, her sense of sexiness and attractiveness, her purpose... it all matters to her. And for one of those even rarer 1 in 100,000 men, it matters a hell of a lot to us too.
Suffering from a rare disease that doesn't have a life-threatening prognosis is awful. If it were to occur all over the face, I feel like western medicine might care more. But it doesn't. It hides away on the genitalia primarily, and is therefore not talked about nor given much attention. Most people probably correct you and say "you mean multiple sclerosus?" if you used the term around them. Today, I made the mistake of forgetting how little is understood when trying to do some research on the healing stages of BXO. It's healing, which is something I've established for some time. But I'm struggling to explain the physiological reasons for why it needs to be so slow, whether it can be made faster, and ultimately, what the stages look like. I'm trying to understand something... Ultimately, I just want to know when will I be back to normal.
If you are travelling somewhere and get asked "how soon until we get there?" you need to know two things. The distance to your destination, and your speed. To know your speed, you need to know how far you have traveled over a particular period of time. When it comes to BXO, I have no idea how far from the end I am. I can roughly measure progress by looking at all the timestamped photographs I've since June 2014, which could give me a theoretical value for 'speed', but I know nothing of the end point. Also, my healing is not linear. There are patches where the skin appears far closer to normal than others, in areas that once appeared uniformly affected. Mostly, this is because the skin has been injured and the injury site has healed back to much more normal skin tissue. So, for me to predict even to a rough level of precision when I might be healed, or at least, when I might look normal again, is virtually impossible. But I also believe AN answer (maybe not THE answer, but an answer nonetheless) lies in the images I have already taken. I think I need to compare images taken over a long enough timeframe, and under identical lighting conditions, then to match the colour balances over all images. It has to be worth a try.
If you're reading this and aren't sure of the purpose of this post, I'll share it with you. It shows you that a) I am arguably more committed than anyone to discovering a way out of this awful mess we call BXO and b) that I absolutely will continue to share it on here to ensure that those following after me are not forced to make the same discoveries that I make. If it turns out that I find no way to accelerate things other than "eat healthy, drink plenty of water, get lots of sleep, exercise, avoid prolonged stress and keep the area dry" then I'll concede that on here and let you all know so you can save your money on treatments and stick to what is proven to work. If it turns out that it takes as long to resolve as it did to get as bad as it did, I'll tell you that. I don't want people under disillusions about what a recovery looks like, but....
I DON'T WANT YOU ALL THINKING THAT LICHEN SCLEROSUS HAS NO CURE AND THAT TOPICAL STEROIDS MANAGE THE SYMPTOMS BUT NEVER TREAT THE UNDERLYING CAUSE, AND THAT CIRCUMCISION IS THE ONLY CURE because that is an abbreviated conclusion formed by a group of people who didn't deem the disease important enough to research it further. I have a reason to find out what works - as good a reason as any - because my own happiness depends upon it. So if the medical industry won't, then I'll at least try.
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