Doris Razo, Systemic Scleroderma

[Sapphirestephy2011]

Hello Doris, my name is Stephanie and I'm 28 years old. I am a daughter of a mother who had Scleroderma. I've left you comments on your profile page. Hope they provide hope for you and others. God bless!

[pregnantnproud]

i have this disease. i am not coping well with it like you are so, good on you girl.

[razzberry7]

@pregnantnproud, Sorry to hear you have scleroderma. It's hard for anyone to accept this disease into their life and try to maintain some level of normalcy. I do have my "Why me" days and it's okay to mope and give in to it for a while. If you are dealing with pain, then I would see a doctor right away to get that under control. Support groups and family can be very helpful. I've found that the world goes on with or without me, so I try to put my best foot forward. God bless you. :)

[katkal3]

My mom had scleroderma too, and we also lived in Chicago when she had gotten it. The cold weather is not too good for that rare disease. Anyways, i hope you the best because you seem to be a really strong and positive person. Never change your attitude!

[razzberry7]

@katkal3,

Thanks katkal3 for your encouragement. On a daily basis I remind myself to stay positive and strong which can be hard with this disease. Chicago's winters are harsh and extremely cold. I dread the ice, snow and wind. Brrrrr. I keep saying "I need to move to a warmer climate!" I'm sorry to hear ur mom had scleroderma. I wish you and your family peace and happiness always.

[rubi7ros]

my sister has this.  what do u mean transplant??? can u tell me more about this "transplant". did it really help u out??

[razzberry7]

@rubi7ros

I sent a message to ur inbox. :)

razzle7

[razzberry7]

@rubi7ros, I kept tryin to post an outline of the stem cell transplant process, from health requisites, interviews, insurance authorizations, etc but kept getting an error code. I sent you a message instead. Best wishes.

[BleedForTheWorld]

What a strange disease. I'm 24, single, and I have yet to conquer my fear of being alone in fighting this disease. After my mom dies, I don't know what I'll do. If it wasn't for her in all my sickly years, I would be dead by now. Thank you for sharing your insight on your condition. This was the first video I clicked on.

[razzberry7]

@BleedForTheWorld, This disease is a horrible disease. I agree also, if it wasn't for my mom helping me in the earliest (and most damaging) stages of my condition, I don't believe I would be here today. A mother's love and support is unparalleled. Being alone is difficult even for healthy people. Do you have an extended support system, like relatives, friends, spiritual and virtual support groups. etc.?  I wish you and your mother a long life together. Regards, dr

[skiaspenboy]

Im sorry, not tring to take anything away from you but i have the same thing as you but, am i like the only 15 year old to have this disease?

[razzberry7]

@skiaspenboy , Sorry for the slow response..my computer was acting up when I tried responding the first time. Scleroderma affects both males and females, young and old. (Statistically the majority are middle-aged women.) My heart goes out to you having to deal with this at such a young age. I hope you are getting good medical treatment for the symptoms. If you would like to connect w/other teenagers w/scleroderma, I would recomend sclero.org. I wish you the best. Take care my friend.

[vassiliki79]

Doris thank you for your kind and sweet words.I am from greece but i had my transplant i nChicago at Northwestern.Did you see signs of improvement after your transplant?i used my brother s cells.i really wish and hope scientists find a cure for that terrible disease which makes people suffer.my best Doris.

[razzberry7]

Northwestern Hosp. is an excellent medical facility. I received mine in Seattle, WA ten yrs ago. I also experienced lung improvement, skin softening, more strength and energy, not immediately, but within that yr. I know it stabilized my condition and saved my life. I thank God that I am still here. Best wishes to you Vassiliki in Greece from Chicago!!

[vassiliki79]

i want to thank you so much for posting this.. i am 31 and i was diagnosed with scleroderma when i was sixteen.it is a terrible disease and i feel i need to hide myself from everyone.i have not come to terms with this disease.last year i had a stem cell transplant which actually helped my skin become softer and my lungs.you reminded me i am not alone fighting that curse,you are a wonderful person and i wish you tghe best!

[razzberry7]

You are an amazing person to have lived with this disease for so many years. I agree, it is a horrible disease. Congratulations on your stem cell transplant!! I also had one on 6/12/2000 using my own stem cells. It sounds like you are seeing signs of improvement. That's fantastic! I, too, have my days when I shy away from the healthy world. I usually feel better once I am outside appreciating the beauty around me. I wish you continued improvement and return to heathy living. :)

[Atyourdoorable]

Thank you very much for sharing your story, I am a mother of 3 children on earth and 3 angels in heaven. 38- I recently had a loss of twins and found the reason was scleroderma. I found your video the day i found the reason for the loss of my twins.

Thank you. God Bless you.

[razzberry7]

@Atyourdoorable, I am saddened to hear of the loss of your 3 precious angels. Scleroderma is a horrible disease. Its effects are vast and vary from person to person. You have my condolences and I will ask God to send you peace and tranquility. Take care of yourself and your family. God bless you all.

[wwwRickytvcom]

I know what causes your disease. I know what causes your sudden flare ups.

[SuperRemooo]

Hey Doris, i really appreciate your courage for puting such a video =)

my had scleroderma from about 4 years .... and scleroderma is a very rare disease in Egypt and doctors only read about it from the books :(

i would be so grateful if you could consult a doctor for what he thinks about: 1)UVA 1 radiation 2)pulse therapy

last question : Do you feel that your getting better or worse by time and by the medication your taking??

thanks alot =)

[razzberry7]

@SuperRemooo, I will send a message to your inbox since I could not post all the information here. :)

[razzberry7]

@SuperRemooo, The treatments I tried are all outlined in my book "Chasing the Cure" I invite you to read the intro at lulu. com

[TheGipsychris]

Thank you so much for sharing these informations. I know someone in a similar situation, helped me to understand a little more about it. Wish you all the best my friend

[Picasso131986]

You are so brave, I am 23 with scleroderma and I understand what it's like to have this aweful disease and I applaud you for speaking up for us:) thank you

[razzberry7]

@Picasso131986 , Thank you for watching and understanding. It is an awful disease, especially when it affects the whole body. For many years I wanted to just hide and keep to myself, but helping others is cathartic for me. Luv, D.

[angie2276]

HI ,DORIS i have a daughter that is 11 now she has the same signs as you but in the beginning she was being treated for jdms its a autoimmune disoder since 2006 but now her doctor told me she has scleroderma and she has it really bad she totally depends upon family its hard to see your child this young have to go threw this but the doctors are saying its really no cure .........any suggestion to this please help

[razzberry7]

I would seek a rheumatologist who is open-minded and willing to try different treatments. The treatments depend on your daughter's symptoms and the progression of her condition. I would address her diet. Eliminate products that come in boxes and cans, sugar, flour and if possible, dairy. This leaves fruits, vegetables and protein (meats, no pork). I know it is difficult to change. If possible, also take her to see a osteopathic practitioner. These are a few of my suggestions. D.

[michk33]

Thanks so much for making this video. I am having some of the same symptoms and am seeing a rheumatologist. They think it's scleroderma, but haven't confirmed it. It's nice to know that I'm not alone.

[razzberry7]

You are definitely not alone. I hope your symptoms are treated and don't progress further. I wish you the best prognosis. D.

[bflatley1]

Thank you so much for sharing your story. I am a medical student and sometimes need to view stories of specific conditions to help me better understand. I sincerely appreciate your help and wish you the best in your journey. Hopefully it is somewhat fulfilling to you to know you have helped me better understand your Scleroderma in my journey to help others. God bless.

[razzberry7]

I appreciate you watching my video, especially knowing that as a medical student you are educating yourself about this disease. I've also volunteered at my dr.s' hospital for medical students to observe my condition. It is rewarding to be able to do this. Thank you and I wish you success in your medical career. :)

[xIndeterminate]

Im 15 and I have raynaurds, scleroderma runs in my family, and i had a blood test the other day to check my auto immune system for it, i havnt had the results back just yet and im a bit worried. Thanks for this video :) x

[razzberry7]

I hope your blood tests don't show signs of possible scleroderma. Some people have raynauds and never progress further with other autoimmune conditions. I am wishing you the best and thank you for watching my video. :)

[clearancequeenie]

My Sister in laws mother just passed away from this horrible disease last night .

[razzberry7]

I'm sorry to hear your sister in law's mother passed away from this disease. My prayers are with her.

[Tsaunders1307]

Hey Doris,

I am a 24 year old male and I had a positive ANA test, am going to a rheumologist on monday, god bless you

[razzberry7]

I hope your test shows a negative result. D,

[1martuska]

First we must find out the causes of this disease, than hopefully a cure. I believe that the poisons in our water and food and even vaccines are loaded with mercury, and they're killing us. Look up the vaccine insertion labels on the flu shots and the H1NI. YOU WON'T BELIEVE WHATS IN THEM! The FDA must know this and yet they still continue to approve flouride which is a neurotoxin as well as other harmful poisons. I BELIEVE THIS IS WHAT IS CAUSING SLERODERMA, LUPUS AND REYNAULDS DISEASE.

[razzberry7]

There are so many potential causes for this disease, it is hard to pinpoint any one. I've also researched the numerous poisons we come in contact with in an average lifetime. We live in a highly toxic polluted environment. and encounter these toxins at home, work, medical centers and outdoors.

[Yngland]

I wish you strength and I feel with you. Jana from Berlin

[razzberry7]

Thank you Jana. :)

[jing684]

Thanks for this informative video! Can you please contact me via email? My name is Connie. Aged 48, recently diagnosed with Scleroderma. I have a question about your medications. Thanks! and God Bless!

[razzberry7]

Hi jing684, I sent you a message with my med. info. :) God bless you also.

[TtownErica]

Thank you for sharing your story, from a fellow patient.

[razzberry7]

Hi fellow patient!! Hope you are feeling well and keeping warm. Doris

[modalus]

Hello Doris,

Thank you for posting this important statement. You are very brave. I dont know what is the cause of scleroderma. But I was wondering if you ever considered the fluoridation of water as a causative agent? And if so what is your feelings about that. i was very touched by your frankness.

[razzberry7]

modalus, I haven't heard about fluoridation of water as being a possible cause. This is a first for me but I will do some research on it. Thank you for the info. I appreciate your kind support.:)

[SupraStub]

I have linear scleroderma and I have to agree, before I was diagnosed (age 14ish) I had never heard of it nor had any of my family. There is a doctor I've been researching recently named Dr. Gerson that had developed a treatment for cancer, which also helps people with skin diseases and a massive variety of other diseases, his research and treatments may be able help you, it's easy to find through any search engine, and it might just take the edge off/help you become more comfortable at least.

[razzberry7]

SupraStub,

Thank you for sharing your research on Dr. Gerson. I appreciate your kind gesture and will read about his methods of treatment. I was treated by many doctors and tried various treatments with no signicant improvement. Finally in Jan. 2000, I opted to undergo an autologous stem cell transplant. I was accepted into the first U.S. stem cell transplant clinical study for scleroderma. My autobiography is called "Chasing the Cure". Take care always and God bless you. D

[adoremydaughter]

Thank you Doris for sharing your story. Most people don' t know anything about scleroderma.

My mother has scleroderma. She was dignosed 8 years ago. Now she has heart problems.She has also feeding problems due to esophagitis and stenosis.Recently we found out that the lungs are affected.

People has to know what scleroderma is, so that we can work all together to fight this disease. Thank you again Doris for what you did. Sharing your story was a very brave thing to do. God bless you!

[razzberry7]

I am sorry to hear your mom has scleroderma and suffers from the symptoms of this disease. I will keep your mom in my thoughts and pray that she receives relief and healing.

Doris

[cthdhex]

Hi, Doris, I got scleroderma too last year and is taking the medicine treatment as well. Hope to have more connection with you but unfortunately I am in HK, so let's us work together in different places and fight against the diesease. There still hope I believe ^^

P.S. Please regret for any grammatical mistakes, if any. :P

[razzberry7]

cthdhex,

I hope your medicine has helped you feel better. Thank you for your encouraging comments and you did an outstanding job expressing yourself!! I believe there's hope for all of us too!! Doris

[cthdhex]

Yes, the medicine did help to relieve the pain, though it has some side effects.

^^Take care~~~

Nicole

[wolvesville]

thank you for sharing your story!

i wish you so much good luck in life

[razzberry7]

wolvesville,

Thank you and I wish you good luck in life likewise!!

Doris

[mnrn2nest]

why did you take off the other video? i thought it was cool that you showed how you work with this sickness.

[razzberry7]

mnrn2nest,

I had second thoughts about it and wanted to put together a better one. I appreciate your watching it and letting me know you thought it was cool. That's awesome! Doris