“How Hard is it to get Diagnosed?”
I have a friend, I met in Manhattan named Dr. Nauman Azhar Piracha, who 6 years ago ; saw many women over 50 who were diagnosed with Scleroderma at UConn where he was studying “Infectious Disease” under the instruction of Dr. Naomi Rothfield.
This means just 6 years ago Scleroderma was classed as an I.D as opposed to a rheumatic illness. Only women over 50 were diagnosed. There are still no Scleroderma ‘experts’ since research is backlogged in Medical Patents and the rise of Big Pharma as the U.S government’s socialist arm in the field of medicine, the FDA puts cost efficiency before ‘Quality Goods and Services’ preventing any progress/advancement to occur on the subject in real and ubiquitous terms. The disease doesn’t have enough celebrity fanfare, even though it’s just as idiopathic (without known cause) as Cancer or AIDS. Funding is low, whatever research is done, is patented and closed to general Rheumatologist community, barriers to the proliferation of important information , advancements and corrections around perceptions of the disease are legally imposed not doctor imposed. Reminds me of the late Harvard Doctor Micheal Crichton’s work: “A case of need” and his closing appeal to legalize Marijuana and end medical patenting.
Watch Charlie Chaplin’s Modern Times, or read up on the Assembly Line, Anomie and other Marxist concepts that apply not only to Capitalism(the Capitalists, Private business owners, monopolists are the dominant, abuser Bourgeoisie class) but to Socialism(The Public sector or government is the dominant class) as well. Communism as defined in Marx and Engels “Communist Manifesto” is impossible to achieve, it encompasses a yearning for ‘classless’ society, devoid of hierarchy and specialization; where every single human being in equal in class: education, financial position, knowledge etc. Dr. Szaz’s anti-psychiatry movement begged that high school students be taught to perform lifesaving surgeries in biology labs. Such radicalist ideas are common tools for researchers to draw attention to their work, so their work makes money enough to feed the Big Pharma Greed machine.
Ergo if one is not at UConn, or with any one of the Scleroderma Foundation many sponsored doctors in California and New York or an old patient of Dr. William Chapin Shiel’s diagnosis is impossible.
The ANA problem and other tests:
The old expensive IFA or IIF ANA test which was never conducted in Pakistan has now been replaced with the new Multiplex method ANA test, which is had a 49% false negative rate. Meaning half the time, it’s turns up negative results for people who are autoimmune. On top of that the new cheap, quick test, which is conducted in Pakistan is not Scleroderma sensitive, meaning it doesn’t even pick up on Scleroderma. So by virtue of the standard FDA approved Big Pharma crime on humanity; the standard ANA test(new, cheap and significantly less accurate) is useless. And the IFA or IFF ANA is not even done in Pakistan.
Blood Protein in People with Scleroderma is high because high Collagen is the protein responsible for skin thickness in Scleroderma. A simple blood test but doesn’t lead to diagnosis: No Stand alone value. My Sister Amena (7 yrs, eight months older than me) tested positive for the original far more accurate and pricey ANA in DC and her blood protein levels were also high very hgh. She was diagnosed with Lyme Disease, the diagnosis was later retracted, but no medical investigation into her real, actual and perfectly ignored symptoms has been done since.
We’re left with the Nailfold Capilloroscopy- “Besides its importance for the early diagnosis of SSc, nailfold capillaroscopy is a useful tool to identify scleroderma patients with high risk for development of vascular and visceral complications and death.”
Which only detects ‘Secondary Raynaud’s for people over thirty.
In conclusion, I sit here with all the symptoms of CREST, a bogus Mild Chronic Non-Specific Ulcerative Colitis biopsy result from a Sigmoidoscopy I had when I was 14 (I turn 30 on November 27th 2015), all logic indicating fiercely that I have systemic Sceleroderma with Gastric/Stomach/Esophagus involvement; and no means for a formal medical diagnosis or treatment.
- Nadia Siddiqi Monday, November 2nd 2015
