2013 Atlanta - Scleroderma 101

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2013 Atlanta - Scleroderma 101 - Dr. Maureen Mayes

Рет қаралды 13,385

National Scleroderma Foundation

Күн бұрын

Пікірлер: 22

@teritrahan4528 2 жыл бұрын

I've not seen Dr Maureen Mayes yet but in October of 2022 we have our first appointment. THANK GOD. My husband feels like he is dying. He has been extremely sick for 3 years without a diagnosis. So thank you Doctor. Just THANK YOU

@lynnsindoni9767 9 жыл бұрын

Dr. Mayes, thank you for the clarity and informative presentation! Your efforts to research, educate and help those of us with this Auto Immune disease, Scleroderma have helped in multiple ways. Everyone with Scleroderma should watch this video. It renewed my effort to understand my difficulties with Scleroderma and gave me hope for future treatments. Yes, we have come a long way!

@teritrahan4528 2 жыл бұрын

THANK YOU!!! THANK YOU For accepting my husband.

@aprilarm8056 5 жыл бұрын

Why is the AP antibiotic protocol not mentioned as a treatment option?

@SclerodermaUS 5 жыл бұрын

Some patients have indicated the Antibiotic Protocol has benefits in disease management. There is a group to obtain more information on this therapy option. www.roadback.org/

@SurvivorMama 3 жыл бұрын

To anyone wondering about AP, try it. It changed my life in my opinion and I have some irreversible damage that has been done but it for sure made a massive improvement in my quality of life.

@teritrahan4528 2 жыл бұрын

Why is fatigue medication not good for my husband to take. Last doctor said it can by a problem

@SclerodermaUS Жыл бұрын

Please review this video: Medications in Scleroderma - Jessica Farrell, PharmD. - 2019 National Education Conference kzfaq.info/get/bejne/rMiYddiarbrepKc.html

@teritrahan4528 2 жыл бұрын

With his systemic sclerosis his finger are black from raynauds. The medication causes his blood pressure to drop. What to do. We have tried lowering the milligrams without much success

@SclerodermaUS Жыл бұрын

Here is a resource about Raynaud's disease which could be helpful: www.mayoclinic.org/diseases-conditions/raynauds-disease/diagnosis-treatment/drc-20363572

@teritrahan4528 2 жыл бұрын

My husband from systemic sclerosis stays extremely fatigue. What can help

@SclerodermaUS Жыл бұрын

Please read this helpful article: www.sruk.co.uk/scleroderma/scleroderma-and-your-body/understanding-and-managing-fatigue/

@teritrahan4528 2 жыл бұрын

Is there treatment for digestive problems associated systemic sclerosis. After my husband eats he is in horrific pain for hours. He is extremely nauseous and has lost 50 pounds over the course of 2 years.

@SclerodermaUS Жыл бұрын

Here are resources which could help: Digestive System (Gut) Involvement in Scleroderma - Dinesh Khanna, MD, MS, - 2019 Education Conference kzfaq.info/get/bejne/mtyffa-Ay7HKhYE.html Gastrointestinal Manifestations of Scleroderma, Medical & Nutritional Management kzfaq.info/get/bejne/gtBnoMyp2Ju3aYU.html 2021 Dr. Tracy Frech - Systemic Sclerosis Digestive Issues kzfaq.info/get/bejne/lZ5hhMiCmLq4dXk.html Learning to Love Our Friend -- The Gut, with Lesley Ann Saketkoo, M.D., M.P.H., Tulane University kzfaq.info/get/bejne/meCherOisZjLZWw.html

@teritrahan4528 2 жыл бұрын

Is falling down common with systemic sclerosis

@SclerodermaUS Жыл бұрын

Here is a resource which could be helpful for understanding balance with systemic sclerosis. Source: Postural balance and fall risk in patients with systemic sclerosis: A cross-sectional study pubmed.ncbi.nlm.nih.gov/34527920/

@duchessmartinez2035 4 жыл бұрын

If my mother had polio (I know polio is a virus), but with the discovery of post polio, are there any thoughts on children born to women who survived polio? I myself have mastocytosis, CNS demylenation and waiting to see if I have scleroderma. One of my brothers was born with cystic fibrosis and my other brother has schizophrenia. I've just been curious for a while.

@tonymaritato7502 9 жыл бұрын

I am a physical therapist treating a patient for more than 2 years now with signs and symptoms consistent with Scleroderma. Over that time she has recently experienced her most significant improvements in pain reduction and increased function in conjunction with a recent complicated hernia repair resulting in more than 8 weeks on a liquid diet. In this lecture Dr. Mayes mentions a client in prison for several years with concurrent resolution of his symptoms. Is there any established research on dietary influences on Scleroderma and autoimmunity? Thanks for the lectures.

@aprilarm8056 5 жыл бұрын

I believe diet has a huge effect on the progression

@kirstygreen8533 5 жыл бұрын

Fantastic to hear!

@esthersacilowski641 3 жыл бұрын

👏