so phenomenal that we decided it was time to do another show with some new information so welcome jane thank you thank you very much so we're going to start out not everybody knows what scleroderma is and you were diagnosed with scleroderma how many years ago one nine hundred eighty seven ok so long time ago and it is very difficult to diagnose right yes it's out on me now and it's connective tissue disorder it just keeps growing and it goes after your lungs esophagus colon heart kidneys and by the time you start to see some symptoms  even cold hands which is raynaud's which is the first the very first symptom of cordura by that time you're in trouble by that time you know the disease hairs destroyed a lot of your organs which is what happened to me colon and a stop a guess you know couldn't eat and couldn't eliminate because your softness was filled with tissue exactly and it was very archaic i mean years ago you know before i got this loose help i would go to boston and they would go down and they would have a procedure where you'd have to stay awake to swallow to swallow the mechanism that actually pushes the tissue girth back into your softer guess and then so after that you know you could get some ice cream down or eat something and so that's the way they did it a long time ago and then it grew back and  group back and then you did it again and it grew back but you know they could access the esophagus they care access the colon so once that starts to have connective tissue growth that's not a pleasant really get that for years not being able to eat or eliminate being weak not having a cure you know having to do all these procedures it was devastating and it's painful right  very and you you know you and it weakens you so it's a it's a very sneaky disease it's you know turn to the stone on the inside that's always been how i feel about it and  there's no cure you know people are so trying today and and i've spoken in front of as you know congress senate department defense and and thank god for all of them who are all trying but it's one of one of those things where there's no benchmark at so you know that's that's good and that's bad it's it's bad in one way because there's not any help that people know of it's good to try and  right so you're at the point where they were going to actually a surgeon in new york was going to remove your intestines exactly like it was last resort yes and then you met with a physician gastroenterologist who suggested that there was a medication that wasn't available in this country but it was available in great britain exactly correct and i'm happy to say it's a princeton doctor and you know at that point she's like what have you got to lose so i was on that i was on that before i met with the colon gentleman so i had been on that for a year and a half and this was before you met with the one who was going to remove your in the chest exactly yes so so he saw the end result of the intestine and all along these two medications one from this country and one from the u k that's not f d a approved and grappling with should i share the shouldn't i you know kind of being responsible but so many people have reached out to you in desperation and as you said in our conversation  you're ready to share that information specifically because you still need a physician it's going to be a physician who's going to prescribe it to you at so let's talk about the medications that first of all put you in what we could call the mission but now you're no longer even on the drugs and you're five exactly correct that which is miraculous so what were the drugs the two drugs are one available here lynn sesh l i n z e s s two hundred fifty milligrams along with two milligrams of wrestler from the u k r e s o l a r and when i first got the combination i said to my doctor why only two milligrams two hundred fifty here to there and she's like don't worry about it very strong and and she was right said the comet so it's the combination that i took and i wanted body to know that it wasn't one or the other and the so and i and i feel very sorry about what happened on your show the first time because we've had almost twelve thousand hits and i didn't tell the people those twelve thousand what i took and i that was my first time up the baton i was nervous god forbid somebody would take it and die right i need i took it i didn't even read the label i didn't care right but that's different you you're different with yourself yes you know and i think i spoke to a couple of days ago about heart the gentleman who did the artificial heart in his obituary last week at the best statement when you're drowning and someone throws you a life preserver you don't check to see if if it's f d a approved yes exactly exactly so i'm thrilled and delighted because you haven't sat back and said oh well you have been working behind the scenes you're very proactive in moving forward this this and you contacted me and said look can i come back on again and share i feel so badly and made a mistake oh well you know again you had your considerations so that you're sharing that information which people can then talk to their physicians about and they can make those choices for themselves just like you did for yourself right and in order to get these drugs you need a doctor's prescription and ak you get that you can contact a candidate drugs dot com they'll come right up there delighted to make a lot of money that  prescription was four hundred dollars every i think forty thirty days so that's a lot of money yes you know and but the good part is now i feel i feel great because i now can tell the information about this drug and just to the grace of god i have a couple harvard couple he some harvard she's from yon they're my only help they've hooked on to this disease they go do research and they're the ones that found the paper that i informed you about yes about the study being done in belgium twelve years ago about the same exact medication i'm taking validating that it works wow and this is in the american journal of gastro and to raje yes in two thousand and two so people can look for that is online i printed it it's available and it talks about the medication so it's kind of very validating and how great and i think one of the next things i want to talk about is in your pursuit of of getting something to happen you know because this is as you described it an orphan disease no one has  latched onto it and said this is mine to then cure or find a way to treat and you actually have gotten the pharmaceutical company to agree to move forward with a study and what they're looking for is at least six participants exactly and this pharmaceutical request was two years ago is so two years ago i was on my way out two years ago to think two years ago and and besides that i didn't know anyone else who had squared or i write i knew no one else i couldn't even go get five people and i mean i can go get five people for a study and you know i went through the connections that i had about people who from organization to new people had scourge erma and i got hit with the you know it's a privacy issue and i can see that no one sure look i have on a company i work for myself with my daughter you know and you know what no one knows i've been sick it's just the way it is nobody likes to say anything right and no one wants their information out there you know and before we share that what people can do one of the things that i want to reiterate is you took this medication for a period of time and then it started to happen what changed in your body it was very quick it wasn't it was just before i was going to have a the colon removed to columbia presbyterian and the gentleman who was going to remove it had never seen anything like this in all the years and he was chief of surgery a columbia presbyterian so it was june eleventh somewhere in the beginning of may all of the sudden i just started to feel better that it was just it wasn't even i think i feel a little better it was like i really feel better and none i started to eat and out of nowhere i started to have elimination you could it was that fast and so when i went back to my gastroenterologist i asked her what's going on i i don't know what to do but i would never it is i have to keep doing to eat eliminate the surgery for the colon but was taken out and then that was in may june went through the summer with the kids and the kids are like don't get your hopes up it could come back and you know what went on i didn't need i felt i didn't need the medicine any anymore i mean it's amazing i took it without thinking about it and i stopped without thinking about it now with the in theys ing story is is i'm not  and there are no symptoms of the disease i'm not on it so something triggered something something happened i'm not on it and how long have you been off of it you're in a half and you're eating and eliminating and there's no science of the scleroderma none and that's what's amazing i'm not amazing anymore this is what this belgian study validates said and now i i feel like i could tell anybody anything if i can help if i can if i can find one person tasha where this would work the way this one person found me and it worked the that that would be it to me yeah just one but now i'm inundated now and getting called yesterday morning at four at yesterday morning i was in philadelphia at eleven o'clock and my phone rang and it was a person from melbourne or stray at four o'clock their time who wanted to be sure that they called so i would answer the phone i had spoken to them before but i've gotten calls melbourne i got a call from laos i got a call from a couple  husband had scleroderma fifty eight years old she said my husband has a big company and we'd be happy to write you a check for the information for the drone let me tell you how people have taught me the right thing to do on your arm your show i didn't tell with a medication wise and i learned how wrong that was i mean these people are showing me they think i show them the way they're showing me what to do like well this kind of you know you coming out and be committed to being an advocate then sent them to you and then gave you your next step which is i think right here cares yet somehow i've got the key i just need the door you know and then that's it simple as i as i look at it with the hopes that you took splurge on your program took it out of the closet and put it in the building to almost twelve thousand people have looked at it through the grace of god maybe we will get that many hits now and hopefully it'll start to expand a little bit and and if i start collecting information from people who want to be in the study i don't need their bank account information i just need them to say i'm willing here's how you can contact me got it that's it you're not asking for anything personal information after that once you get pharma you know here if you're your study candidates then the next step is between them and the pharmaceutical cartel if that's about all your doing is providing the doorway so you're asking people hey if you've got this disease or someone you know has this disease and you're willing to be part of a study which basically nobody is really doing then just contact me let me know how to get in touch with you and when they're ready to move forward the pharma company will contact you and then i am in no position to collect information  more than six yeah i don't know what the chances are for those people coming back i feel like i've lost a little ground that's ok you know we'll just get moving forward because you couldn't do it at that point you didn't have enough information and so i'm just happy that you're back so i want to and it's going to be in the credits at the end but if you want to fit in jane your information and say sure i'm interested in finding out more about the study i have slaughtered are i'd like to be part of a study she's derma that shows up on the exterior how is that different when you can see it and there's a build up of tissue you can see it actually you know when i first found out called even the children who get it it's called the curse of the sword it's just like this on the child some of the children it's just like a sword type effect here but it actually disfigures you terribly and when i first saw it i thought oh my god i mean my daughter found me up stairs against a wall on the floor crying the because i couldn't believe that was the route that i was going to go and somehow i got the kind that that destroyed you in and you know how lucky i am that i got that because i'm not sure i would have the courage that these people have to face what happens on the outside disfigure and you know you know you have hope and you can't see  it's devastating when you do see it yeah and you know i'm saying what had you keep going for all those years you were in pain you couldn't eat there was no cure but it occurred like there was no hope  chronically uncomfortable couldn't eliminate nothing worked nothing worked what had you keep going my kids my kids my three kids and i you know and that's why i was so surprised at the end when i when i said to them you know i said to my daughter especially you know it's ok i can go because i can't do this anymore and this was a mother and all those years though i thought to stay with them as any mother w what mother wouldn't do that but now i think you know could i be in a position now i mean they i have fourteen grandchildren office three children and said now i think because i so believe that this disease is genetic and so far there's nothing out there to disprove me so this is a wide open rodeo for everybody with anything and so i think with even my children would have to cistern attic i think i got it from my father there's no proof of that but what if i were to pass a stamp so now i'm motivated not just for my kids but for all the other kids who get this i got a call from texas you know her child was in  kindergarten couldn't get off the couch these calls i don't know how you take these calls and you don't react to these calls i mean you know and it happens in the children so i say to myself well maybe could this be a way if it's coming up that  that early detection or somewhere along the line you know by the time i get through this life and their life is coming up there should be more on the square derma plate that should be more help for this disease you know  then a lot more it should think that your father may have had it did he have any symptoms you know my father had severe arthritis v a lot of pain i mean there are symptoms that sneak up for this disease that fit the profile of anything that's her little arthritis and your hands are cold when things are numb i mean it could be when the doctor sees you could be anything that and that's what happened here it's misdiagnosed but you know he had a couple things that i know unfortunately that is been gone but you know i think about what small portions he used to things that i thought at the time were very french up the case you know and you know how you just have a feeling i don't know i have that feeling and so so i that's why i think it's important to look at all the people out there in that could be walking around they did a study an interesting study i don't know one of the numbers but i do know to the numbers on people a five year study on people who had which is called hands blue numbing thing so they did a five year study and twelve of the percent of the people had squared of course i don't have that other number for you but i'm intrigued with twelve this is a rare disease well twelve percent isn't so rare right now wow our so what why were you talking to the department of defense well because they invited me to speak because they're finding out that the troops now have squared erma or there's being diagnosed with girder troops and i when i first heard department of defense i felt you know congress and senate they're a little easier because they don't know as much as they should now so you feel like you can hold your own especially when they ask you to spell the disease then you know that i'm ok here department of defense this is quite a machine in these meetings they set up they set up twelve doctors are in a twelve physicians are in there scientists are in the people who know this disease are in there and then you know and then this one is me and so that's a totally different story in the only the only thing you can do there can your self down a little because the they go around the room and they they tell you who they are and what they've done and you're almost afraid to say anything the only graceful thing you can do is tell your story yes absolutely and then when they were talking did you come away with the experience of they have no clue either well you know with the department of defense you know i had to sign something and so i understand you know why  was there right and i was there to vote on a study that they were thinking of doing and and so i was there to vote on a study that they were doing and i was amazed at the study in comparison to what happened to me that was a study for nine million dollars and here i have something that worked and did you share that with them and i certainly did i certainly did and i got the numbers you know on the board how they decide is that it's a one to ten one being the highest number and were they going to ultimately did they vote to go ahead with the study or they don't they never tell they don't they don't tell me right they don't i did not work exactly and as we went around the room the numbers were very very high to do the study eight nine ten eight nine ten but the time i was done the numbers were two three to three and i think it just came from them asking me you know very validated questions and maybe hopefully answering them correctly about this disease you know and so i just you know i loved being there and doing that and i started to understand it's i'm not going to say this is a free for all in clinical studies but it is a free for all anybody can jump in anybody who can say so i'm just go their own choice you know it works for you you're not saying you know go out do this because it worked for me is going to work for you but you also don't want to withhold that information because people are desperate this is the right thing to do now in the u people are sick they're getting better in the united states people are dying this is unacceptable yeah this is somebody has to move out now you know nothing big just because that i say cured me we've got a paper here a validation here  people to do a study i mean we're a group now i feel thanks to you you're just gathering everybody for me and thank you thank you so much so thank you so much for coming back and for getting in touch with me and saying ok there is a next step you know that wasn't that only showed me that there has to be a next step so thank you and we're going to continue to stay in touch and maybe there will be another maybe there will be and thank you very much i mean it's not hard to sherman thank you for joining us