Living with Systemic Scleroderma: Meet Amy

Amy Gietzen from Buffalo New York has been living with Systemic Scleroderma for 18 years. Her insights and wisdom come from living with this chronic condition for half of her life.

[@Markinpuff]

I also have crest, it’s a tough thing.

[@needcafeineveryday4639]

Thank you for motivating me. I completely lost hope when I was diagnosed with scleroderma. Because my job is a cook. And I dreamed of becoming a professional chef. And now it's time for me to find a new dream. It's depressing. How 'bout you? What do you do these days ?. Lately I've always wondered what job is suited for scleroderma.

[@lillyrocks2011]

How are you? I have scleroderma too. What did you study?

[@ushmaprem8624]

DOES ANYBODY KNOW SOMEONE THAT HAS CURE THEM SELVES FROM SYSTEMIC SCLEROSIS ??

[@bluerealty1]

Plz see roadback.org for stories of remission - Wishing you the best in health!

[@bystudy8041]

Charlene i m from india.. Suffering from ssc since 2012 how is this blog helpfull.. As in India ppl rarely know about this problem ..going under treatment since 2012..genuinly need support.. So dat I can share my journey n pain..

[@bluerealty1]

@@bystudy8041 There is a page on the site for Doctors or you can share the information on which antibiotics you can try with your Doctor. Unfortunately the India formula of Minocycline doesn't have a very good record for being as effective but perhaps you can order this antibiotic from England. The site also has many recovery stories and helpful information from people suffering from different rheumatic diseases, including Scleroderma. You can also post questions after becoming a member, which is free. I hope this helps. The research on the site will explain rheumatic diseases including Scleroderma are caused by infections. The antibiotics in the Tetracycline family at LOW doses over a long period of time have helped many including my daughter. Let me know if you have any other questions.

[@bystudy8041]

Thnkuu so much Charlene... Ur daughter also suffered from the same problem. Sad to know.... But has the problem gone in remission phase now?? What all medications were recommended for her... How can i contact you personally plz reply... It's actually urgent coz if the treatment is possible in England i can come there.. My relatives live there... But i want to know the severity of the problem of your daughter and how much is it cured now???

[@bystudy8041]

Now i am on mycophenolate mofefil cell cept.. Earlier the dose was 2g a day.. Cuz of brain fogging now they have reduced to 1g daily.... N depin retard.. Actually now the problem is getting On my nerves.. I genually need a good treatment.. Plz do reply.. Cuz my doctor suggests me to continue with dis n dz z d Best treatment he can give me.. Charlene Hoping for a better life in future

[@bluerealty1]

@@bystudy8041 My daughter is now 13 years old. She started getting sick with Systemic Scleroderma at age 8. At age 12 I found the roadback.org website and I have learned from them what to ask Doctors for. Everyone is different and because you are an adult Dr Brown recommended a different protocol for you. For my daughter or children they give Azithromycin 250mg 3 times per week with 300 to 500 mg IV of Clindamycin for 3 to 5 days straight every 2 to 3 months. For adults they either add Minocycline 100mg twice a day, everyday or they just do Minocycline alone. It depends on your constitution and what kind of co infections you have and how long you have been sick. We are in the US so I dont have any information on Doctors in England but if you sign up on the website I told you about above you can 1) Learn all I did about the treatment and 2) Ask if they have any Doctors on the list that treat in England. But even if no one has a doctor in mind you may be able to ask your Rheumatologist to try these antibiotics. Again perhaps your Doctor in India can read the information for Doctors on the website or you can print it off for him. Since you have been sick since 2012 he should be open to trying this treatment used in the US and other countries. My daughter was very sick with dozens of Scleroderma symptoms and now she is much, much better. It isnt a cure but it has helped many people to greatly reduce symptoms and it has put others in remission. My daughter has just now been given Minocycline and I am very hopeful that her symptoms will continue to decrease and one day she will be in remission. All of this does need to be done under a Doctors care but the people at the road back.org were very helpful to me as I'm sure they will be to you. I have been a member 14 months now and I can't believe how helpful they have been. This Antibiotic Protocol to treat her high Mycoplasma has saved her life.