2014 Anaheim - African Americans and Scleroderma - Dr. Virginia Steen

Studies have suggested that African Americans suffer more severely with scleroderma and its complications. Come listen to a scleroderma expert with a particular interest in treating this population.
Video Production:
Magnus Media Group
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[@11kwright]

Thank heavens for doctors like this lady investing in people of colour. She is spot on about every little thing she says. I am exactly as she puts it. I don't feel I need to go on mycophenolate, I never use to want to go to the shops, couldn't walk the distant or climb stairs. I also feel more stressed about the fact my skin and image on my face could change as my lips have thinned. My theory is that black people were always looked on as ugly and ridiculed and therefore we need to feel good about ourselves - I know black people are pretty nowbut it stems from that. I know we are now equally beautiful but our image is hugely important because we know it's how the world views people - people are really superficial and cruel. She's also right to say that black people are a little sceptical about the medical profession because we know that doctors use to be very ignorant before and would always misdiagnose us or they would say "can't really see it on your skin. I don't think anything's wrong. Just go away and stop being a pain". Not to that severity but you get the point. We also know that probably half of black people die from severe disease because the doctors don't have a clue that it manifest itself differently in black people and don't understand the disease when it comes to black people and just throw protocol treatments at them and when they die it's like - we tried to help him/her. But if researched they didn't help at all because they didn't know what they were doing in their treatment of this person. She's also right that it's nothing to do with black people not going to see the doctors (they do all the time), it's nothing to do with environmental or social as I work or use to and environmentally am lucky. I'm intelligent enough to research huge amount of research on the disease and I follow the SclerodermaNews.com which is helpful and keeping people up to date with latest treatments out there.
My symptoms at point of diagnosis (boy she's good)
Pre diagnosis, I couldn't walk, my legs were in a lot of pain. My body was feeling extremely stiff and my neck would seize on one side. I had a cough with a cold that was quite bad (bed ridden with zero energy) then when the cold got better the cough persisted, hence I quickly saw my GP (I don't avoid doctors but some inexperience doctors looks as though they want to avoid me and I can tell).
At the point of diagnosis, I didn't know anthing about the symptoms. However, I realised my forearms had oval patches and underneath my wrists and on parts of my hands there was some thickening of the skin and minor dark patches.
After much testing, they diagnosed Scl-70 antibody but no other. I've already told them about the IMMUNOFLOURESCENT ASSAY TEST, NAILFORLD TEST (not good for black people due to the skin being naturally taught than Caucasians). I also informed them about SCLERODERMANEWS.COM which is highly informative about the disease and the latest pioneering treatment, research and trials. I can only hope when my physician said that that's all in hand (various assay test and nailford) and they've done the antibody testing and mine is just scl70 - hope she right and knows what she doing as I'm a little sceptical because I'm black. Some diseases affect gender, age, race etc and just hope I'm in good hands otherwise there'll have killed me I suspect some time down the road!!
One of the serious things that started happening to me was my gastrointestinal system started to slow down. I just wasn't going. Then I stopped going but luckily after much TH-cam research and gaining important information about what to do if the system stops working, I was able to realise this is where I need to fast and drink lots of fluids to kick start it again. I also ate just blueberries and kale and spinach in the morning and nothing else. Surely after 1.5 days it slowly started working. This is when I turned my diet around. It's working fine now no problems since then - many months ago.
My lungs showed some minor changes however, all the pain I felt started to go although due to my diet 180 degrees turned around. I don't eat any carbs anymore, I eat a huge amount of greens, turmeric, garlic, lemons, grapefruits, nuts, seeds (inc. chia, flax, hemp), nato, cheeses high in K2 yogurts, huge amount of butter, some coconut oil and water.
Before my diet, I never had any energy and my shoulders as the author said was stiff and I couldn't raise my arms which I thought was normal at my age, 50. I research and doctors were saying one needs to nourish the mitochondria cells to gain energy. Mine came back like a miracle.
I've noticed my bottom lips have thinned out, I've had a digital ulcer on my finger which healed in 4 days (excruciating pain for 1.5 days only), I've got a digital ulcer on my gum which is healing after some months. I can run now, walk distances I wouldn't want to go because of breathlessness. Was in Greece late August/September and walked all day and sometimes ran and couldn't believe I was fine. Did a lot of swimming too. Getting over a cold my son gave me before going down the gym as she said exercise is crucial for the pulmonary system to stay in shape. My blood pressure is fine, my carte roid artery is not plaqued. I'm taking Bio-Kult, Red Krill Oil, Benfotiamine, Gingseng, Selenium (2 brazil nuts daily), Milk Thistle, L-Glutathione etc.
My doctor thinks I should now go on mycophenolate. I'm worried if I get a digital ulcer it won't heal due to the neutrophils and lack of immunity. I'm scared of all the side effects that could send me spiralling down too. But I'm also scared now that as this author has pointed out things could progress for the worse when I think I'm healthy - which I do think that. My CR markers are at the moment 10 and the other one is 36 - which is slightly raised.
Doctors like this women are worth their weight in gold because she values all lives equally and realise that there are differences that must be taken into consideration IF the doctor is going to keep them from dying. This is the tester to see just how good doctors are. If I die then they aren't really that good as I'm healthy so far and at my stage I should be able to be kept from dying.
I'm a twin and she's healthy with nothing.

[@lucyb3885]

Great information and report in this video, Thank you. Minute 54:06 YES! Check your blood for vitamin D3 levels, (one function of D3 is to elevate the immune system. Try to keep your blood levels optimal or normal high. To get there, you may need 2000 IU or 5000 IU of D3, always check your blood and ask your doctor.) Likewise, check your levels of vitamins B12, B6, K, B7 Biotin, ask your Dr. to also measure your hydrochloric acid production in the stomach, to find out if is too low, especially if you have acid reflex. (If the result is low, read about pure betaine and talk to your doctor). Eat food such as Korean Kimchi, (see videos on how to make kimchi). Eat prebiotics foods, don’t buy yogurt with colorant and sugar, and instead take live raw probiotics. Do not eat soy products (read labels and soy alert! brochure) avoid processed foods and sodas, eat foods as close to the natural state as you can. Eat lots of onions. Keep up your good health with exercises, clean water, and change the filters of your air conditioner just like you change your toothbrush. If you do this tell your Dr. to monitor your improvements. Study about Ayurveda herbs such as Turmeric, ashwaganda, and the Chinese root Astragalus and the American slippery Elm - but be careful to read the benefits and side effects. Also be careful choosing pure forms not with colorants, titanium oxides, stearates, sodium benzoate, aluminum.(as well as in your creams shampoos, deodorant) Please read more about what I mentioned in this comment, It is important for your health and Always talk to your Doctor.

[@matios6013]

very interesting info..🙏🙏🙏very kind of you..for your recomendation