And also taking antibiotics can cause candida overgrowth. The antibiotics kill the bacteria but leave the yeast, causing them to take over.
Also, I have taken Accutane 3x and it did make the vellus hair cysts go away only while I was on it, they came back a few months after I stopped each time.
I wouldn't recommend anyone take Accutane though due to hair thinning/hormone issues.
Also, I have taken Accutane 3x and it did make the vellus hair cysts go away only while I was on it, they came back a few months after I stopped each time.
I wouldn't recommend anyone take Accutane though due to hair thinning/hormone issues.
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Hey all,
I was diagnosed with SM as a child and have spent the better part of my life seeing various doctors and dermatologists trying to combat this condition. In the past year, I've cut milk out of my diet and haven't had any new cysts form on my body. I still eat cheese and occasionally cheat and have some ice cream, but replacing milk with soy milk seems to have helped (or I've just been lucky over the past year). Just throwing this out there as an option for folks to try as I know how frustrating this condition can be.
I was diagnosed with SM as a child and have spent the better part of my life seeing various doctors and dermatologists trying to combat this condition. In the past year, I've cut milk out of my diet and haven't had any new cysts form on my body. I still eat cheese and occasionally cheat and have some ice cream, but replacing milk with soy milk seems to have helped (or I've just been lucky over the past year). Just throwing this out there as an option for folks to try as I know how frustrating this condition can be.
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It’s been awhile since somebody posts in these SM threads. I’m wondering how everyone is doing. Any updates?
I think that it sucks that because SM in not a life-threatening disease, it (SM) doesn’t get much attention from the scientists and from the families. To me, I think this disease is as bad as having a fatal disease; it’s like I’m alive but (at times) I feel like I have no life. It’s like there’s a constant reminder—a harsh and severe punishment—every time I look in the mirror, or when the nurses or the medical students looked at me and I see it in their faces – and it’s not even a transmittable disease. (And even if it’s a transmittable disease, have a heart! (Especially for the people who chose these health-related professions.)) I know life isn’t fair. There are people who are in worse positions, e.g. that girl who was burnt because of a drunk driver. And I am grateful that I have 2 normal hands and feet.
However, living with it hasn’t been easy, at least for me. My parents know that I have it, yet they kept asking me if I want to go to the beach or the swimming pool. (Who did they think they’re kidding? The last time my mom asked if I wanted to go to the beach was just last week.) I used to enjoy going to a water park, the swimming pool, and the beaches; now, it’s just different.
From reading websites, the majority of the scientists think it’s a mutation in a gene coding for Keratin 17, inherited in an autosomal dominant fashion. But from reading the stories, there are many people who have SM when their parents don’t have SM. In my case, my parents don’t have SM. So, is it a sporadic mutation or an inherited condition?
If it’s an inherited condition, is it possible that the expressivity for this defected gene is so low – that many parents of the affected ones don’t show any symptoms? (At least the severity of SM varies from person to person, according to one of the dermatologists I met.)
If it’s a sporadic mutation, is it possible that the affected individuals will likely not pass on the condition to their offspring because the (occur sporadic) mutation only affects some somatic cells?
Any geneticists here?
BTW, are there a support group and a website dedicated to SM? Also, how many other people (with SM) have other skin conditions as well? In my case, I have keratosis pilaris and eruptive vellus hair cyst. I also had a somewhat serious case of acne, but now it’s under control.
I think that it sucks that because SM in not a life-threatening disease, it (SM) doesn’t get much attention from the scientists and from the families. To me, I think this disease is as bad as having a fatal disease; it’s like I’m alive but (at times) I feel like I have no life. It’s like there’s a constant reminder—a harsh and severe punishment—every time I look in the mirror, or when the nurses or the medical students looked at me and I see it in their faces – and it’s not even a transmittable disease. (And even if it’s a transmittable disease, have a heart! (Especially for the people who chose these health-related professions.)) I know life isn’t fair. There are people who are in worse positions, e.g. that girl who was burnt because of a drunk driver. And I am grateful that I have 2 normal hands and feet.
However, living with it hasn’t been easy, at least for me. My parents know that I have it, yet they kept asking me if I want to go to the beach or the swimming pool. (Who did they think they’re kidding? The last time my mom asked if I wanted to go to the beach was just last week.) I used to enjoy going to a water park, the swimming pool, and the beaches; now, it’s just different.
From reading websites, the majority of the scientists think it’s a mutation in a gene coding for Keratin 17, inherited in an autosomal dominant fashion. But from reading the stories, there are many people who have SM when their parents don’t have SM. In my case, my parents don’t have SM. So, is it a sporadic mutation or an inherited condition?
If it’s an inherited condition, is it possible that the expressivity for this defected gene is so low – that many parents of the affected ones don’t show any symptoms? (At least the severity of SM varies from person to person, according to one of the dermatologists I met.)
If it’s a sporadic mutation, is it possible that the affected individuals will likely not pass on the condition to their offspring because the (occur sporadic) mutation only affects some somatic cells?
Any geneticists here?
BTW, are there a support group and a website dedicated to SM? Also, how many other people (with SM) have other skin conditions as well? In my case, I have keratosis pilaris and eruptive vellus hair cyst. I also had a somewhat serious case of acne, but now it’s under control.
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Hi Bios, no real updates here! I've tried to change my diet as most of you suggested but didn't last for more than a couple of days: I had an incredible headache and new bumps popped up really fast :o
After giving it a thought, I think that going 'cold turkey' on so many foods isn't a good idea for me and I've gotten so confused about what to eat and what not that I've let it go for a while.
Now I'm planning to give it another try after my holiday next week and to change my diet only slowly, so it will be easier to maintain. But...I really need your advice on what to eat and what not, so could you experts give you opinion about this:
I don't eat meat really often, so I've decided to allow myself meat once a week (when I eat at work and don't have any influence on the menu). I eat fish about once a week. Instead of meats, I eat a biological veggie burger once or twice a week, do you think that's a good alternative?
I've decided to cut out all diary (again, except for the day that I eat at work), but allow myself to cheat once in a while with grated cheese on dinner etc. Do you guys think biological or goat's dairy is a better option than normal?
Now, I really really really can't force myself to cut out chocolate entirely , so what do you guys think is the best option: biological chocolate or without added sugars (maltitol?), chocolate made with soy milk or with rice milk?? There's a health store just across the corner, so I can get all weird types but I really don't know which one to choose.
I only drink water, biological tea and coffee (and cheat by drinking 2 glasses of biological wine a week)
Then on the carbs, I don't really get this part....do you guys still eat any bread/rice/pasta? I was thinking about opting for 3 slices of whole grain bread a day (with biological jam or peanut butter, still has sugar I no, but at least no additives) and some (biological again) puffed rice cakes or biscuits without added sugar and additives to eat in between, is that a good idea?
To sum it up, I'm planning on cutting down on meat and diary, switching to biological alternatives without added sugars or additives, cutting out all kind of processed drinks, eating more fruits, veggies and whole grains, but I'm not really sure if this is the kind of diet you mentioned. I know I'm not able to follow a really strict diet (because I eat at work and with friends often, but also because food gives me some sort of comfort and I really find it stressful to stop eating carbs etc.), so it doesn't have to be the perfect diet but I am at least trying to switch for better altneratives so it will be easier to slowly change my eating habbits without falling of the waggon after a week or so.
At bios: I really understand what you mean about the whole beach/swimming part. I decided a few weeks ago that I would switch my tiny bikini's for a bathing suit so I would be comfortable swimming (my stomach is the most affected part of my body), but I couldn't find one anywhere! I'm a european size 36 (I think that's a size 6 or 8) and wanted something that look's a bit nice as well but it seems like all bathing suits are made for large sizes and only come in boring black :( So I haven't been to the beach this year and because I haven't told most of my colleagues and friends about my condition, it made me feel really sad to sit at home alone with this beautiful summer weather :cry: (to be honest, I think this is one of the reasons I can't force myself to change my diet as well, due to my condition I sometimes feel so alone, not doing a lot of fun things, not having a relationship because I don't feel comfortable showing my body to anyone, not sporting because I'm afraid of locker rooms...going out for dinner or drinks seems the only option for me to have a social life without having to answer any akward questiosn)
I don't think there is a SM support group, but there is the Pacyonicha Congenita group ***edited by moderator*** web addresses not allowed which is for people who suffer from PC, a condition frequently related to SM. I've contacted them and got a package with loads of information and they even called me at home, but I still haven't joined because I found it a bit too confronting (sometimes, I can't really cope with thinking or talking about it too often, so I try to ignore filling out questionnaires and talking to new physicians if I think it's not going to help me anyway )
Well, even without any updates, this has become a really long post Take care!
After giving it a thought, I think that going 'cold turkey' on so many foods isn't a good idea for me and I've gotten so confused about what to eat and what not that I've let it go for a while.
Now I'm planning to give it another try after my holiday next week and to change my diet only slowly, so it will be easier to maintain. But...I really need your advice on what to eat and what not, so could you experts give you opinion about this:
I don't eat meat really often, so I've decided to allow myself meat once a week (when I eat at work and don't have any influence on the menu). I eat fish about once a week. Instead of meats, I eat a biological veggie burger once or twice a week, do you think that's a good alternative?
I've decided to cut out all diary (again, except for the day that I eat at work), but allow myself to cheat once in a while with grated cheese on dinner etc. Do you guys think biological or goat's dairy is a better option than normal?
Now, I really really really can't force myself to cut out chocolate entirely , so what do you guys think is the best option: biological chocolate or without added sugars (maltitol?), chocolate made with soy milk or with rice milk?? There's a health store just across the corner, so I can get all weird types but I really don't know which one to choose.
I only drink water, biological tea and coffee (and cheat by drinking 2 glasses of biological wine a week)
Then on the carbs, I don't really get this part....do you guys still eat any bread/rice/pasta? I was thinking about opting for 3 slices of whole grain bread a day (with biological jam or peanut butter, still has sugar I no, but at least no additives) and some (biological again) puffed rice cakes or biscuits without added sugar and additives to eat in between, is that a good idea?
To sum it up, I'm planning on cutting down on meat and diary, switching to biological alternatives without added sugars or additives, cutting out all kind of processed drinks, eating more fruits, veggies and whole grains, but I'm not really sure if this is the kind of diet you mentioned. I know I'm not able to follow a really strict diet (because I eat at work and with friends often, but also because food gives me some sort of comfort and I really find it stressful to stop eating carbs etc.), so it doesn't have to be the perfect diet but I am at least trying to switch for better altneratives so it will be easier to slowly change my eating habbits without falling of the waggon after a week or so.
At bios: I really understand what you mean about the whole beach/swimming part. I decided a few weeks ago that I would switch my tiny bikini's for a bathing suit so I would be comfortable swimming (my stomach is the most affected part of my body), but I couldn't find one anywhere! I'm a european size 36 (I think that's a size 6 or 8) and wanted something that look's a bit nice as well but it seems like all bathing suits are made for large sizes and only come in boring black :( So I haven't been to the beach this year and because I haven't told most of my colleagues and friends about my condition, it made me feel really sad to sit at home alone with this beautiful summer weather :cry: (to be honest, I think this is one of the reasons I can't force myself to change my diet as well, due to my condition I sometimes feel so alone, not doing a lot of fun things, not having a relationship because I don't feel comfortable showing my body to anyone, not sporting because I'm afraid of locker rooms...going out for dinner or drinks seems the only option for me to have a social life without having to answer any akward questiosn)
I don't think there is a SM support group, but there is the Pacyonicha Congenita group ***edited by moderator*** web addresses not allowed which is for people who suffer from PC, a condition frequently related to SM. I've contacted them and got a package with loads of information and they even called me at home, but I still haven't joined because I found it a bit too confronting (sometimes, I can't really cope with thinking or talking about it too often, so I try to ignore filling out questionnaires and talking to new physicians if I think it's not going to help me anyway )
Well, even without any updates, this has become a really long post Take care!
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Hi NL - sorry I haven't been checking these posts in the past year but I also see that a new thread started - this guy posted under "
The cure for Steatocystoma Multiplex: 5-fluorouracil, -----it is a medicine for skin tumour" in another steadyhealth post and there's a pretty big thread there that I started following.
Re: your diet - this can be very challenging to eliminate so many things at once, for sure. I would recommend you start this very slowly - doing a lot of dietary changes at once is going to be very difficult for you so I would start with say, just dairy - switch to almond milk, rice milke, or even soy milk. I personally prefer almond milk. You can also get all kinds of non-dairy based cheeses at the health food store (soy, nut based). I know that giving up dairy is a huge sacrifice, and I admit, I have cheese once in a while (a few times a month) but the rate of new cysts has subsided considerably. I do still get new ones every once in a while. Once you get used to that (perhaps a month), try eliminating chicken, pork, etc.
In my research (and personal experience), I would eliminate (or minimize) the following, in the following order:
dairy including cheese
chicken (the most hormone-pumped meat in our food supply)
pork
beef
I still eat all of the above, but as I said, in moderation. I probably eat some kind of meat about once per week. I'm also experimenting with restricting wheat based on what others have posted above, but that is VERY difficult for me to give up. Will keep everyone posted.
In response to an earlier poster, I also have eruptive vellus hair cysts in addition to SM, and I also have polycystic ovaries. I am also kind of freaking out right now because I have been reading about how renal failure (kidney failure) seems to have some kind of connection so I'm investigating that further - I don't want to sound like a hypochondriac (I don't think I am at all) but I have to go the bathroom CONSTANTLY and I feel like it has only gotten worse over the past few years...so I am planning to get that checked out. I want to know if anyone else has any kidney issues/issues with having to urinate frequently.
I am also going to start a blog so we can all talk about this more freely without being monitored for phone numbers/email addresses we want to post, I'll post that info shortly once I get it up and running! I want to write more to give you guys more moral support - I almost want us to have some kind of mini-convention so we can support one another with our obscure and bizarre disease!
Keep fighting everyone! and keep living!
The cure for Steatocystoma Multiplex: 5-fluorouracil, -----it is a medicine for skin tumour" in another steadyhealth post and there's a pretty big thread there that I started following.
Re: your diet - this can be very challenging to eliminate so many things at once, for sure. I would recommend you start this very slowly - doing a lot of dietary changes at once is going to be very difficult for you so I would start with say, just dairy - switch to almond milk, rice milke, or even soy milk. I personally prefer almond milk. You can also get all kinds of non-dairy based cheeses at the health food store (soy, nut based). I know that giving up dairy is a huge sacrifice, and I admit, I have cheese once in a while (a few times a month) but the rate of new cysts has subsided considerably. I do still get new ones every once in a while. Once you get used to that (perhaps a month), try eliminating chicken, pork, etc.
In my research (and personal experience), I would eliminate (or minimize) the following, in the following order:
dairy including cheese
chicken (the most hormone-pumped meat in our food supply)
pork
beef
I still eat all of the above, but as I said, in moderation. I probably eat some kind of meat about once per week. I'm also experimenting with restricting wheat based on what others have posted above, but that is VERY difficult for me to give up. Will keep everyone posted.
In response to an earlier poster, I also have eruptive vellus hair cysts in addition to SM, and I also have polycystic ovaries. I am also kind of freaking out right now because I have been reading about how renal failure (kidney failure) seems to have some kind of connection so I'm investigating that further - I don't want to sound like a hypochondriac (I don't think I am at all) but I have to go the bathroom CONSTANTLY and I feel like it has only gotten worse over the past few years...so I am planning to get that checked out. I want to know if anyone else has any kidney issues/issues with having to urinate frequently.
I am also going to start a blog so we can all talk about this more freely without being monitored for phone numbers/email addresses we want to post, I'll post that info shortly once I get it up and running! I want to write more to give you guys more moral support - I almost want us to have some kind of mini-convention so we can support one another with our obscure and bizarre disease!
Keep fighting everyone! and keep living!
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I was also diagnosed with SM two weeks ago...reading those post, what I can do only is to exercise and do a better diet.
I cannot afford a surgery...and besides, most of the successful surgery were in U.S...
Too sad.I hope there's an easy,affordable way to at least prevent it from spreading...It's already 2011..any new studies about it?
I cannot afford a surgery...and besides, most of the successful surgery were in U.S...
Too sad.I hope there's an easy,affordable way to at least prevent it from spreading...It's already 2011..any new studies about it?
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Yes, I'm wondering the same thing too. It's 2011, there should be a treatment for this disease available already. T_T
However, because of the lack of the awareness of this disease, I doubt many people are looking for a way to cure this disease.
This disease is rare, yes, but so are many other diseases that get more attentions than SM.
The thing is we need to create public awareness to gain people's attention. And we don't even have a SM support group, unlike other rare diseases. I think one person did try to come up with the SM support group website, but in the end it didn't really materialize and it's gone after it's less than a month old.
Partly, I blame the mod (to the mod, please don't ban me). The mod keeps blocking any links to other websites/email addresses. I can understand why, but I think the mod should allow link/email posting; the benefits just outweighs the bad risks. For example, the mod even block the posting of Pachyonia Congenita support group website, a non-commercial website. What if a person with PC is trying to look for more info & support about his/her condition, but he/she cannot find it because the mod blocks that website? (Many doctors & geneticists think there's a link between PC & SM, as many people with PC also have SM.)
And while I do appreciate steadyhealth for giving people a place to discuss their health concerns, steadyhealth is just not dedicated to a certain disease. For example, is there a section dedicated to SM? pictures of SM? causes of SM? treatment options of SM? And I think in the present, steadyhealth is the website people with SM frequent most -- what if somebody comes up with a SM support group website again and before the website can even take of, it dies because it doesn't get enough attention to sustain its operation? Again, I think if steadyhealth really care about people who're suffering from diseases, they should allow people to post certain links/email addresses.
It's sad, most people don't even know that this disease exists. Some people even think that SM is contagious/infectious when it's genetic. And to those who know they're just thinking it's non-life threatening but it can really consume you alive.
However, because of the lack of the awareness of this disease, I doubt many people are looking for a way to cure this disease.
This disease is rare, yes, but so are many other diseases that get more attentions than SM.
The thing is we need to create public awareness to gain people's attention. And we don't even have a SM support group, unlike other rare diseases. I think one person did try to come up with the SM support group website, but in the end it didn't really materialize and it's gone after it's less than a month old.
Partly, I blame the mod (to the mod, please don't ban me). The mod keeps blocking any links to other websites/email addresses. I can understand why, but I think the mod should allow link/email posting; the benefits just outweighs the bad risks. For example, the mod even block the posting of Pachyonia Congenita support group website, a non-commercial website. What if a person with PC is trying to look for more info & support about his/her condition, but he/she cannot find it because the mod blocks that website? (Many doctors & geneticists think there's a link between PC & SM, as many people with PC also have SM.)
And while I do appreciate steadyhealth for giving people a place to discuss their health concerns, steadyhealth is just not dedicated to a certain disease. For example, is there a section dedicated to SM? pictures of SM? causes of SM? treatment options of SM? And I think in the present, steadyhealth is the website people with SM frequent most -- what if somebody comes up with a SM support group website again and before the website can even take of, it dies because it doesn't get enough attention to sustain its operation? Again, I think if steadyhealth really care about people who're suffering from diseases, they should allow people to post certain links/email addresses.
It's sad, most people don't even know that this disease exists. Some people even think that SM is contagious/infectious when it's genetic. And to those who know they're just thinking it's non-life threatening but it can really consume you alive.
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BTW, does anyone have a good dermatologist to recommend in Calgary/Toronto? I live in Calgary now, but I'm thinking of moving to Toronto just for better treatments...
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@ bios
I live in Toronto and I was diagnosed with SM in 2009 -- I go to Dr Eric Goldstein.
I live in Toronto and I was diagnosed with SM in 2009 -- I go to Dr Eric Goldstein.
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Thanks mariaa,
BTW, I was reading the Pachyonychia Congenita Project website. I'm amazed at how organized they are. They have volunteers, paid employee, doctors, scientists, banker, and et cetera on their team. They accept donations and they even have a toll-free number. They also have and participate in meetings. And they have this International PC Research Registry (IPCRR) which provides:
* Free assistance with disability, insurance or other claims
* Free genetic testing (WOW!)
* Free medical consultations and coordination with local physicians (Again, WOW!)
* Access to on-line forum for/with other PC patients
* Access to materials prepared specifically for PC patients including videos and presentations from PC meetings
They also provide booklet and brochures for patients, schools/friends, and medical professionals.
And to think that PC is rarer than SM, but yet there is zero organization for people with SM. I'm still a student, so it's not very plausible for me to set up a Steatocystoma Multiplex Project. But are there anyone with enough wealth and time to start a SM Project?
I know that SM is not fatal but so as PC, and living with these diseases is like being consumed alive (at least for me).
If rarer genetic diseases such as Pompe and Mucopolysaccharidosis now have treatments, why don't we?
I think the treatments for those diseases become available because the parents of the affected children really look out for their kids, and create public awareness and form organizations. But there is like zero public awareness for SM, no project/organization for SM. And because SM doesn't strike until the affected individuals reach puberty, the parents don't care as much? (Teenagers and adults are not perceived to be as cute, cuddly, and vulnerable as little kids? When we can feel as helpless too.)
I read on PC website and the family who started the PC Project was inspired by a story of a boy with MPS (Mucopolysaccharidosis). The mother has the condition and so as her 2 other boys. They started out in 2001 when they received no response from researchers/institutions and now there are many people who care and look for the cure. If they can do it, maybe so can we?
BTW, I was reading the Pachyonychia Congenita Project website. I'm amazed at how organized they are. They have volunteers, paid employee, doctors, scientists, banker, and et cetera on their team. They accept donations and they even have a toll-free number. They also have and participate in meetings. And they have this International PC Research Registry (IPCRR) which provides:
* Free assistance with disability, insurance or other claims
* Free genetic testing (WOW!)
* Free medical consultations and coordination with local physicians (Again, WOW!)
* Access to on-line forum for/with other PC patients
* Access to materials prepared specifically for PC patients including videos and presentations from PC meetings
They also provide booklet and brochures for patients, schools/friends, and medical professionals.
And to think that PC is rarer than SM, but yet there is zero organization for people with SM. I'm still a student, so it's not very plausible for me to set up a Steatocystoma Multiplex Project. But are there anyone with enough wealth and time to start a SM Project?
I know that SM is not fatal but so as PC, and living with these diseases is like being consumed alive (at least for me).
If rarer genetic diseases such as Pompe and Mucopolysaccharidosis now have treatments, why don't we?
I think the treatments for those diseases become available because the parents of the affected children really look out for their kids, and create public awareness and form organizations. But there is like zero public awareness for SM, no project/organization for SM. And because SM doesn't strike until the affected individuals reach puberty, the parents don't care as much? (Teenagers and adults are not perceived to be as cute, cuddly, and vulnerable as little kids? When we can feel as helpless too.)
I read on PC website and the family who started the PC Project was inspired by a story of a boy with MPS (Mucopolysaccharidosis). The mother has the condition and so as her 2 other boys. They started out in 2001 when they received no response from researchers/institutions and now there are many people who care and look for the cure. If they can do it, maybe so can we?
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Thanks mariaa,
BTW, I was reading the Pachyonychia Congenita Project website. I'm amazed at how organized they are. They have volunteers, paid employee, doctors, scientists, banker, and et cetera on their team. They accept donations and they even have a toll-free number. They also have and participate in meetings - the academic ones included. And they have this International PC Research Registry (IPCRR) which provides:
* Free assistance with disability, insurance or other claims
* Free genetic testing (WOW!)
* Free medical consultations and coordination with local physicians (Again, WOW!)
* Access to on-line forum for/with other PC patients
* Access to materials prepared specifically for PC patients including videos and presentations from PC meetings
They also provide booklet and brochures for patients, schools/friends, and medical professionals.
And to think that PC is rarer than SM, but yet there is zero organization for people with SM. I'm still a student, so it's not very plausible for me to set up a Steatocystoma Multiplex Project. But are there anyone with enough wealth and time to start a SM Project?
I know that SM is not fatal but so as PC, and living with these diseases is like being consumed alive.
If rarer genetic diseases such as Pompe and Mucopolysaccharidosis (MPS) now have treatments, why don't we? I think the treatments for those diseases become available because the parents of the affected children really look out for their kids, and create public awareness and form organizations. But there is like zero public awareness for SM, no project/organization for SM. And because SM doesn't strike until the affected individuals reach puberty or later, the parents don't care as much? (Teenagers and adults are not perceived to be as cute, cuddly, and vulnerable as little kids? When we can feel as helpless too.)
And in the beginning the researchers could not find funding either because Pompe and MPS are so rare (rarer than SM), so the cures/treatments are not that profitable -- but they eventually found nice companies that don't care as much for profits.
I read on PC website and the family who started the PC Project was inspired by a story of a boy with MPS (Mucopolysaccharidosis) who eventually gets his effective treatments. The mother has the condition and so as her 2 other boys. They started out in 2001 when they received no response from researchers/institutions and now there are many people who care and look for the cure. If they can do it, maybe so can we?
BTW, I was reading the Pachyonychia Congenita Project website. I'm amazed at how organized they are. They have volunteers, paid employee, doctors, scientists, banker, and et cetera on their team. They accept donations and they even have a toll-free number. They also have and participate in meetings - the academic ones included. And they have this International PC Research Registry (IPCRR) which provides:
* Free assistance with disability, insurance or other claims
* Free genetic testing (WOW!)
* Free medical consultations and coordination with local physicians (Again, WOW!)
* Access to on-line forum for/with other PC patients
* Access to materials prepared specifically for PC patients including videos and presentations from PC meetings
They also provide booklet and brochures for patients, schools/friends, and medical professionals.
And to think that PC is rarer than SM, but yet there is zero organization for people with SM. I'm still a student, so it's not very plausible for me to set up a Steatocystoma Multiplex Project. But are there anyone with enough wealth and time to start a SM Project?
I know that SM is not fatal but so as PC, and living with these diseases is like being consumed alive.
If rarer genetic diseases such as Pompe and Mucopolysaccharidosis (MPS) now have treatments, why don't we? I think the treatments for those diseases become available because the parents of the affected children really look out for their kids, and create public awareness and form organizations. But there is like zero public awareness for SM, no project/organization for SM. And because SM doesn't strike until the affected individuals reach puberty or later, the parents don't care as much? (Teenagers and adults are not perceived to be as cute, cuddly, and vulnerable as little kids? When we can feel as helpless too.)
And in the beginning the researchers could not find funding either because Pompe and MPS are so rare (rarer than SM), so the cures/treatments are not that profitable -- but they eventually found nice companies that don't care as much for profits.
I read on PC website and the family who started the PC Project was inspired by a story of a boy with MPS (Mucopolysaccharidosis) who eventually gets his effective treatments. The mother has the condition and so as her 2 other boys. They started out in 2001 when they received no response from researchers/institutions and now there are many people who care and look for the cure. If they can do it, maybe so can we?
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My SM is bothering me particularly today. I just wanted to vent that :/
Eversince I got diagnosed in 2009, I've been pretty depressed about it....
I don't know what's going on with mine though because the bumps that I used to have under my arms are gone...but now my chest and trunk area is getting all covered with the cysts :( .... being a girl, this is horrible times a billion :******(.
In 2011, you'd think they'd find a cure for this.
I hope everyone is doing well.
Maria
Eversince I got diagnosed in 2009, I've been pretty depressed about it....
I don't know what's going on with mine though because the bumps that I used to have under my arms are gone...but now my chest and trunk area is getting all covered with the cysts :( .... being a girl, this is horrible times a billion :******(.
In 2011, you'd think they'd find a cure for this.
I hope everyone is doing well.
Maria
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i was diagnosed with SM when I was 23 (but had it for years before that) & like most people here was told it was something that I would have to live with, somi have which has basically meant never taking my shirt off in public. But at the time I was just thankful it was not cancerous. It has been 15 years since the diagnosis and I decided to look online to see if there was a cure or at least a forum for people with SM. I can tell you I have tried accutane for acne and it did seem to help a little with the SM but after I quit taking it they started right back up. I have tried different diets and because of my adult acne I don't drink milk, eat chocolate, peanuts and other things that seem to trigger breakouts. I have squeezed or poked with a needle countless cysts which 9 out of 10 times come back. I have recently taken doxycycline and monocycline and tried numerous topical solutions for my acne but have always hoped they might help the SM. I also recently started drinking only water and also just lost 25 pounds and I was not really that overweight to begin with. One thing that might seem strange (maybe not to anyone here with SM willing to try anything) but I started applying roll on deodorant (dont ask me why) to a cyst that had been on my forearm for a decade. I cannot tell you the number of times I squeezed this thing to try to get it to pop with no luck. Well after a couple weeks of applying the deodorant one day I squeezed and it exploded. So then I started applying the deodorant to my chest/stomach and I don't know if it's my imagination or maybe all the other things I mentioned I am trying but they seem to have gotten slightly better. I mean they are all still there but they seem to be less noticeable and new ones appearing less frequently. I by no means want to give anyone false hope but it's obvious to me that if there is ever going to be a cure it is going to be discovered by someone that has SM and more than likely stumbled upon. This is why I started searching online today. And I must say I was kind of surprised/disappointed there was no forum or message board dedicated to SM. But I really have no clue how rare SM is. Although I am the only person I know that has it and that includes my own family. But if there is interest maybe here in the near future I will create a site and find out.
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Hi, i have been going to the doctors since last 3yrs i was never botherd about this now this is really getting worse i had this since childhood now i am 20yrs old this is getting too much and irritating sometime feel like why me what have i done so bad that i deserve this? but i guess there's nothing i can do by cursing, the last time i went to doctor was on 11.08.11 the doctors said they can't do nothing, so does that mean people like me will spend our life with this?? then why there's so many doctors scientist dermatologist etc etc, why do we pay money to the governments???? please we need help find cure for this love our life and our family someday we all have to die but at least die without regrets even i want to live like others, please help us..
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Hi, i have been going to the doctors since last 3yrs i was never botherd about this now this is really getting worse i had this since childhood now i am 20yrs old this is getting too much and irritating sometime feel like why me what have i done so bad that i deserve this? but i guess there's nothing i can do by cursing, the last time i went to doctor was on 11.08.11 the doctors said they can't do nothing, so does that mean people like me will spend our life with this?? then why there's so many doctors scientist dermatologist etc etc, why do we pay money to the governments???? please we need help find cure for this love our life and our family someday we all have to die but at least die without regrets even i want to live like others, please help us.
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