Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About scragporter

  • Rank
    Senior Bronze Member

Profile Information

  • Location
    phoenix Arizona
  1. Hi, Long-term disability is a major factor due to the present management being on relieving symptoms rather than treating the condition. New therapies are coming out all the time and the treatments are getting better. A lot of these chronic disorders are now more effectively treated and the management is improving year on year. Patients are seeing improvement, my wife being one and she is hiking mountains where she couldn`t climb stairs two years ago. My wife got better and she tells me all the time how she didn`t know how bad she was until she improved. Why should disability be the final out
  2. Hi Amberjolie My wife had bad digital ulcers from scleroderma; she would put nitro paste around the edges, not directly on the broken area. She also used to use hot packs inside her gloves; you get them from camping stores. She had electric gloves but they were very bulky and hard to get on and off. She also had a hot wax tub that she placed her hands in which would help with the contractures and loosen the skin up. Viagra and meds for pulmonary hypertension helped to some degree in improving them. She has none since her stemcell transplant two years ago. I used to live in En
  3. Hi J, My wife didn`t tell anyone for two years as she didn`t want to scare our two boys. She told me not to talk to anyone as she felt others wouldn`t understand. I found it difficult to cope with but found solace in just reading the post on this website and it helped me a great deal. She was in denial for a while and wouldn`t read about the condition. Since she got better after her stemcell transplant at the Northwestern she is shouting from the roof tops about her treatment and stood in front of 120 people with autoimmune disease about her journey with sclero on Friday. All the best,
  4. We had a great turn out for the evening presentation. Over 125 people came to the venue, there was over 20 with scleroderma 2 of them have had non myeloblative stem cell transplants over 2 years ago and none are on any immunosuppressant or steroids. They got to talk about there treatment and how marvelous it is to have their lives back. With Dr Burt’s Assist trial you no longer have to do a control arm with cyclophosphamide like the SCOT trial you always get the stem cell transplant. It is the only treatment that treats the cause of scleroderma the faulty immune system and not just symptom man
  5. Just a reminder that there are still a few places available for Friday's talk by Dr Burt in Phoenix. If anyone is interested please PM and let me know. Thanks Craig.
  6. At the talk in Phoenix there will be a number of people who have undergone the stem cell transplant at the Northwestern for Scleroderma and other autoimmune diseases. They will be able to discuss their treatment with people who come along. You can send me a PM for more information.
  7. Thank you I forgot to post the date Dr Burt is here in Phoenix its Friday 7th January and the talk is free at the venue.
  8. My wife had a stem cell transplant for systemic scleroderma 2 years ago at the Northwestern under the care of Dr. Burt. She is back to work as a RN and life is good again for us. She is off all her immunosuppressants and her pulmonary artery pressures are now normal off those meds. Dr. Burt, who treated my wife, is giving a lecture to medical staff in the day but in the evening is giving a talk about his treatment for scleroderma to the public at 6 30pm at Squaw Peak Pointe Hilton on 16th st if anyone in Phoenix is interested let me know and I can reserve you a spot.
  9. Sorry to hear about your daughters ulcers, vasodilators like norvasc helped my Raynauds, also viagra can help with circulation and nitro paste applied topically around the ulcers can aid in helping circulation to the affected areas. Pulmonary hypertensive meds like Bosantan and Leitaris have been shown to aid not only pulmonary hypertension but aid secondary digital ulceration healing. I was on Leitaris for my pulmonary hypertension and with the other meds my ulcers improved. I also had IV cyclophosphamide over six months once monthly it somewhat helped soften my skin and stopped my lungs from
  10. Hi, Fighting insurance when you are dealing with health problems is a nightmare. You need to send as much evidence as possible I have many research articles, videos and patient testimonies that can help you. The letter which pokey linked to is how we got Blue Cross to pay for it. I helped a lady in Sacremento who got her appeal granted also. You can contact us any time and I will help you. Craig
  11. Hi thanks for thinking of me, I'm doing well my white cell count is up and climbing which is good. No infections thus far which is good. Overall feel very well indeed! Cheers Sharon and craig
  12. Hi Sorry to hear your having trouble getting coverage. I had stem cell in November my husband wrote a great letter which will help you with your fight. If you go to my website, which is listed on the ISN Story Collections Page as Sharon's Stem Cell Transplant Blog, there are links that can help you. Good Luck!!
  13. Hi everyone, after some concern with my white cell count not being as high as it should have they decided to let me go home. This was music to our ears!! It is so nice to be home and be with the family. We realize how lucky we are to have gone through the treatment without many complications. I have been truly blessed. I now just have to avoid getting an infection and get my strength back. So we are going to have a quiet family holiday. We wish everyone a Merry and Warm holiday and a Happy New Year!! Best wishes Sharon and Craig
  14. Hi, Blue Cross Blue Shield paid 100% for the procedure. You will be told that the procedure is not covered. We went to a medical appeal and proved using research that the procedure was cost effective and the best treatment option in the long term treatment of scleroderma. Other insurance companies like United Health Care are very supportive of this treatment. I have put together a letter on how we fought for the procedure and it has helped others who have been through the medical appeal process. Read below. Letter to Aid others Fighting Insurance Companies After dealing with Blue
  15. Hi Georgette, Both my hands were swollen, tight and curling in, the right hand was worse than the left and they were very painful when manipulated. I went to an occupational therapist who firstly did paraffin wax treatment on both hands, then she massaged my hands, then she did bending and straightening of all fingers and wrists. She told me to tell her if it was too painful so she could stop. I felt that was beneficial I also had night splints to wear which I confess I was not good about wearing. She also gave me some exercises and putty which I could work with at home. After having cyclophos
  • Create New...