welcome my name is not tasha sherman and i am your host and my guest today is jane gresham as well as being a photographer and having a business right here in princeton she's really here to talk about something called so it's something that not a lot of people know about but it has a life altering impact on people's lives and she will share her stories so that she can create some awareness of also let people know that there are some alternatives welcome thank you natasha thank you very much so i think i heard the word school or durata tom point somewhere but you know you you hear of our condition or whatever it is and you don't see too much attention and then i met you so let's talk about what's leroux burma is actually it i believe it's been around a very long time and but you know it's a growth of college in  tissue and in a chuch stand your organs the so you don't even know you have it and a lot of times you don't even look sick people don't look sick and and it's very hard to diagnose so you might be going to your doctor with some of the symptoms but they don't know it either and i know that for a fact you know it's a hard word it's hard to diagnose and it shuts you down it's i pump a it's like it turns into stone so by the time is like oh my god and it really does solidify your organs is that the jury is taking in your body yes so let's talk about some of the presenting  of the big symptoms is called hand which a lot of people have i mean how many people around have that and your hands actually because the tissue growth is in there and so the blood can't get through so it's run away tissue he ran away because it's just like we it's just a just go and and so you can turn blue you can't button your pants you can't button your glass you can't retrieve your money in the supermarket this is when it's on fire and cold and your hands become hard and a lot of people lose their finger with this disease you know and so by the tech and that's something that you can see so you're if you can see your hand but inside you can't see anything ok so i'm going to backtrack again so one of the symptoms is cold hands but painfully cold handily cut and then i read also with that very often the skin starts to tighten on the hands so then the hands start to current curl and i saw this video clip of a dead saying he recognized that something was wrong when he did a thumbs up to his daughter and she couldn't do it exactly so it's kind of things are curling in is one symptoms but this is if it's diagnosed earlier it probably would be better it can't be diagnosed that's one of the problems it's it's it's misdiagnosed because in the you where nick now when he even knows about it they can't spell it they can't write you know and even when you go to the hospital and you which i've been to many times and you check you know how you go when you first check in and they ask you you know the disease and they're like scleroderma well it's not on the list but what's it like where it's an auto immune and so i mean i've had a twenty years so i've come from the very beginning there is some awareness now you know it's an orphan rare disease but it's starting to get some visibility but there's no benchmark there's no cure there's no treatment there's no benchmark that's what makes it hard so the research going on for the people who do know that do you know that they have it it's all over the place nothing's been proven as re hundred and fifty thousand people in this country have squired erma but i'm of the opinion there's a lot more there's a lot more than three hundred fifty thousand just undiagnosed just five nose i'm just telling you so it's early detection valuable in any way well i think it's early detection valuable well once you get past the fact that someone's told you that you have it and you're hysterical when because then you start to look into it you know i think did then like myself when there was no help there's been absolutely no help that you learn to seek out information especially when you get very very sick and which has happened to me and three or four times i thought i was done and you can't swallow you can't go to the bathroom with you just take those two things in anybody's life where you can't swallow and you can't go to the bathroom well then yes so you know it is impacting and i did read that sometimes it's more on the surface sometimes it runs a particular course and then disappears and  o you know if on the surface it can be very disfiguring but yours have not on the first surface yours is happening on the inside and so tissue grows and fills the esophagus not so well you can swallow no all unless you go in and have some treatments i mean i'm very lucky the four doctors who have taken care of me for over twenty years a printer and doctors but four of them have taken care of me and you know and when they take care of you they go in and try to why they try to widen it one of the doctors you know have i do transfusions every six months you know my blood level drops to single digits i mean this is a horrific disease and actually my doctors don't know how i've made it but you know i'm just i'm blessed because you know i do a lot of work with the school or during the foundation out of boston and they head up advocacy bigger look for money to try to get the research out there i've worked with them for girl that he married her wishes assistant her sister had it and so you know i said to him well maybe we could do a little something and it was graciously a kids there we did the whole thing thirteen times we did the tape because she couldn't pronounce the word dharma and he said to me jane she's got another name and that's the problem with this disease she doesn't go out of the dozen got another name but i've always thought that stone was a great name for this disease because that's exactly what it does so you know so just so you kid eat and then you could eliminate of can't breathe dear heart it's in your out do you survive well i think you know the couple of people that i do know and i don't know too many people i've worked with the scleroderma foundation for quite a while so they have opened great doors to you know i've been the voice for scleroderma in congress and in the fenech in december i went in front of the department of defense because they're now finding  the military people have scleroderma go figure thinking it's in the environment but that's very encouraging because as i said at the department defense i feel really good to be here because of somebody if the department of defense is on it maybe  will start you know the role but i mean for myself i took a chance years ago i had a doctor who said why don't we try something out of the country and i was so sick and i said why don't we do it so so i took this drug not available here at a tremendous cost five hundred dollars every forty days for four years i took it with another drug from this country and took it took it it kept me alive it kept me alive and all the sudden in may of last year as i was waiting for my colon to be removed because it was inoperable petrified flat as a pancake the gentleman at columbia presbyterian was going to take it out in may my my point was in june in may i started and i started to each and i started to have a limb anation and i called the doctors and i'm like what's going on here this is like ridiculous and they're like well don't get yourself too excited because whatever it is is just you know going to keep the colon surgery to this day i am still been blessed with some sort of remission and the one doctor who came up with the silver bullet which is what i call a silver bullet she said you know it's cumulative it's medically explainable she thinks it's cumulative after years of taking it that all of a sudden something worked and i think so too because i feel so good i feel like myself again i feel like myself what we need for the twenty years i can eat a guinea i need for me to eat it and my kids are like oh my god i mean i ate nothing that water wouldn't even go down to nothing but you learn to move around it but i was down to under one hundred pounds which is why i got sick so much you know the blood level drops i mean your body's only good bunch of questions but how did your family deal they i have to say my kids are my strength and must've been terrible for them with care about a mother who cared and couldn't get out of and couldn't get out of bed and  then you know we have a business and my daughter and i and a lot of times she would take over for me and i kept this to myself i mean nobody wants to work with anybody's afic it's just a normal thing if you try in your business to keep going and do it you have but you know i think their strength i mean there were times especially last may i for the first time in my life i said you know what it's ok to go doing because i couldn't hold on anymore i couldn't do it and for me to say that because with something and you can actually feel it going down and tightening and and then you regurgitate it throws it back up again it won't let anything go down it gets stuck in the pockets of the tissue grows in there and then on top of me yet there hasn't been anything which is why actually i was thrilled when you asked me to come right because i know how good i feel and i know that something triggered something and i know that i have come upon some kind of an alternative for this disease and i think back so important because i think you know i think if i could get some interested parties i mean i've worked with farm pharmaceutical i love pharmaceutical but pharmaceutical takes a long time this you know biotechs they're a little harder they're looking for something you know investors are looking for something and i know i have something i have no doubt i don't have a cure but i have an alternative to the suffering and the inability i mean just think about or i wouldn't be here because i feel so good and and someone something like this happens you have to do you know what you have to give back you happen to share and i still have to make sure because i know how sick i was i know how terribly else it's so you know people die from this analyst i know the television personality bob saget his sister died exactly and it seems to me i saw something jason alexander from seinfeld his sister had absolutely so but people do die from this so then when they treating you so you are taking some kind of medication here but if it's an incurable disease what kind of medication are they giving you what is the purpose of the medication that they gave you before you found this medicine in england like you know o let's throw throw it against the wall and see are they treating symptoms what were they giving you absolutely nothing all that time nothing and there were some research studies at a couple of larger hospitals where they asked me would you like to try it would you like to try it don't ask me why but i never tried it i really relied on myself i really tried to keep myself going especially when i'm a bit changes your life and you have to change with it if you want to stay here joe it changes your life and it's painful and not pleasant and and it's hopeless almost it's almost hopeless but but i never did any of those and all of the ones i never agreed to doing all had no no result medication allowed in that england what results have they produced what a great question well it's seven hundred fifty thousand people in the u k who have squared erma so about hundred fifty thousand yeah so it's pretty well known over there and so this is a drug of x been very effective over there go figure why you know we can't get it over here of use is the so you've spoken in front of government official no absolutely and have you asked them  r i absolutely have and you know i think i think i think in answer to your question i think it's an unknown disease it's it's so hard to track i think the research that's going on is all free floating everybody thinks they have the idea i think what i have it's almost the reverse it's almost like something didn't work so take a look at it rather it's only see it's almost backwards  something worked go take a look at medical records go see what like all the information we're getting ready this country doing no no no because it is the first time i've spoken publicly not in front of a farmer or  designed to help you swallow a little bit better ok and the other is a hundred times more effective over there i mean when i took this it took a little bit took a couple of weeks but you know i was able to get a little something down to kind of free float it in there and you just held on but you know you body's your body so you lose weight you lose blood you know the system is so poor is that you lose plug in the blood just sits right through and so you you go back in for these transfusions to get yourself up again but how many times can you do that you know ultimately your prognosis was what if you hadn't taken this medication well i think are far surpass the number a mean die either when you find out within three months or twenty something years that's how quick it is because the people who are finally know that they haven't done you're already done when you find out that it's heritage done done in time you're absolutely done to just you know for now you have it now are you so done because it's such an unknown there and you don't look fact you know it has all the but so i think part of the thing is awareness to get more people to ask my god why have the saying right oh my god c'mon yeah i've heard of this thing to have a thing right so an awareness is like really important but the other part is you know can you imagine if you can stop somebody they can have a life again i've got a life again because of this medication i think of the cumulative effect of it absolutely and medically explainable i like those words i also like the word miracle but i stay away from that because the reality is medically explainable right ok so somewhere in there you know these medical records i mean genetic i have always thought the department of defense i can't say too much about why i was there but they think it's environmental some people they get trauma i think it's genetic i think it's definitely genetic i think everybody's got a little bit of this somewhere and some people it triggers it and takes off and i think it's an old time disease i think it's been here a very long time and i'm just going to briefly why do you think for i well you know i mean at one point i was so determined about things that i my father passed away twenty years ago and i said to the kids you know i think if i had took his body out and we did some d n a work on this that i'm telling you something would surface with dad now would be a benchmark and something with me i just think it just is just the scott feeling i ha it just goes back and it goes back i mean it's an orphan disease today but i think it's an old old orphan disease so when you refer to it as an orphan disease what does that mean i pharmaceuticals call it an orphan disease see no there sky real significance there helen no mother no father no mother that's a good way to put it no mother no father it kind of free floats out there but there's a big interest now there's a big swing and pharmaceuticals to address there are seven hundred rare diseases out there ok now scleroderma has just made number forty one ok with the department of defense but look at all the you know there's so much pain and suffering from so many things that so many people go through that you couldn't even try to fix everything but when something does get fixed like with me it's definitely worth looking at it's definitely there's something there right so i was thinking to myself you know if there if there's no cure so far there isn't you know then what good is it to for the public to pay attention to it but what you're saying is there is no cure but so far we could direct our attention toward that but at the same time bring in what there is to alleviate it exactly also many people are not suffering and people actually can't experience remission are a rare person who has survived this long with yeah and i think that and i i think that's really important i think i survived out of sheer will i have to say that and my kids now that they have seen me in the worst possible shape that any mom could ever be and and you know and i so i don't know how i've made it this far but you know i just there is a purpose to this and how did i get so lucky what happened happen so if you are going to write like to know a little you know they have these handed cards postcard size and you want really to convey your message in five or six point what would those points be one if you see symptoms well i yeah i think the symptoms are and you're not going to know about anything growing in your lungs or anything like in your heart your esophagus track but maybe you might know wait a minute i'm having trouble swallowing i'm having trouble breathing reason ok having trouble breathing having trouble swallowing you know and tightening of the skin and your hands are blue that's a key sign or a note is the key sign that's the freezing and how many people i mean if you would just put that out there i think oh my god you would get such a response wait a minute i have cold hands right or wait a minute not just normal cold enough talking about excruciating recall yes yeah if you're in the freezer department of the supermarket you're done if you go in there and you have to reach in anywhere ice cream or whatever by the time you get to check out you can open your wallet you can't get a credit card to to count your money and you can't help pack the things and the pain the only way to relieve pain if you go home you leave all your groceries in the car and you put that hot water on and you try to run your fingers through it to get rid to get that circulation going there but the pain involved in running it under that because sometimes what they go for is to mask the symptoms or to your is so again i want people to know that there's a purpose for your being here you want people to be aware there is a disease called or a condition whatever you want to call it school or a lot of people have it a lot of people probably have it and it's on diagnose absolutely hard to diagnose but if you pay attention to some of the symptoms you might be able to get it diagnosed earlier rather than later right and there's a blood test that you can take  those the antibodies those elevated numbers and you know i mean the doctors i mean unless you you know if you go to a doctor and and i i so love my four doctors so love them and their princeton doctors i so love my doctors but you know regular people are afraid to ask questions or you know they just want to go in they want to hear that everything is ok they want to leave and you know if people would just go in and say look there's this thing out there drive this thing do i have run i said i have this but i think it's also important are most physicians familiar with the alternatives that let's say they have in england i think that's  one of the most important pieces is knowing that there is such a thing so that not only if you are you again you have to push for answers you give and some places there aren't any but you still have to push for them and then if it does come back you  push for information about alternatives that don't necessarily exist here in fact that to make them available here about are exactly and that's a great point to make i mean how does one of my doctors go figure this out one you taking a chance see can i need to read the bottle i don't even want to know why would i read why would i read the bible that are going to work you know i it was either take it  either take it or die take that chance or go yeah and found you know and try to come up with that money every forty days you know and and you know there's no at least some of the pharmaceuticals here have wonderful programs where they you know they can they donate medication to different people around ever but we're talking about another country yes and we're not going to go there and thankfully there is a scourge or a foundation and i'm sure they're fabulous it and are proactive but i think it's important again it's not to scare people but to provide information that can ultimately help them exactly and then to be a demand for information and alternative well i think one of the things that the disease has going for this is social media and then when i got it nobody who knew that area nobody knew about it nobody today you can get information yes you can this is the quickest fan and i'm like you know if i didn't then they then on h b o this is their sixth season they said there's a disease called grayscale in there and why don't you go look at  the cause it sounds like scleroderma so i go on the site last week and i'm looking at it it turns your inside to stone it is listen to me it is exactly what happens a scleroderma and then you go to the bottom and it says what is the equivalent of a think it's important to before you to be able to take all your lessons which took you a lot of years and where you're at now which is in a way miraculous but there is there are things that it's