2018年9月22日 · Hi everyone my 6 year old son has just been diagnosed with en coup de sabre variant of scleroderma. Symptoms presented about a year ago but we've only just got a diagnosis. He is currently on prednisolone and methotrexate with weekly folic acid and topical ointments.

2016年9月30日 · Odom If you read my profile you can see that I was diagnosed in 1981, but in the last year and 1/2 have had further extensive testing and to this day my Sclero Specialist in Albany and Rheumatologist have been, as well as the rest of my care team at URMC in Rochester, N.Y. have all agreed that as extremely rare as it is, I also was diagnosed with Limited Scleroderma/Sine Scleroderma.

2015年3月17日 · I was diagnosed with linear scleroderma (en coupe de sabre) about 4 years ago. I have seen multiple dermatologists and a rheumatologist with no clear plan. I had a punch biopsy that showed "foci of perifollicular lymphocytic infiltrate" and was suspicious for "manifestation of collagen vascular disease".

2016年5月28日 · Just when I got used to the EDS diagnosis... then came the En Coup de Sabre which developed rapidly since December. It's about an inch down from my hairline and a pretty big cleft. The rheum took about 10 vials of blood, scheduled for PFTs, Derm took a biopsy and said I will likely need to see a Neuro and likely get an MRI of the head with ...

2012年7月15日 · This disease manifests differently in each person. Because you have en coup de sabre I would lean toward saying that the severe headaches can be caused by that from what I have read. The way that en coup de sabre shows itself is by involving connective tissue and even bone. Bone pain can be very severe.

2011年4月28日 · The National Scleroderma Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the National Scleroderma Foundation, an Inspire trusted partner.

2018年12月25日 · Search: Limited Scleroderma Doctors . Our non-profit partner for this community, the Scleroderma Foundation, also provides a directory of Scleroderma research centers in the United States. You can read more at the link below. The Scleroderma Foundation: Patient Center Directory . We hope this helps and we wish you the very best! TeamInspire

2017年12月21日 · I'm sorry to hear about your daughter. My grandson was diagnosed with linear scleroderma with en coup de sabre last year when he had just turned 7. He also has a lot of leg and hand pain. We see Dr. Torok at Children's Hospital in Pittsburgh. She is a highly regarded specialist for Scleroderma in children. She is caring, and very thorough.

2018年1月10日 · Thanks! And our daughter just completed three months of IV steroid infusions and is on weekly 25mg methotrexate shots for a few years to come. So we're looking at other options to support her skin and try to repair the damage. I can't find any studies, which is why I reached out about personal experiences. So hard to find info on coup de sabre!

2017年2月9日 · Hi my daughter has en coup de sabre aswell she has it on her forehead she finished treatment in Nov and is now on methotrexate for the next 3 years and she is only 10 years old I'm just wondering where on your skull do you have the marks thanks