With Support of AARDA, Autoimmunity Institute Aims to Better Understand and Treat Diseases Like MS
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The American Autoimmune Related Diseases Association (AARDA) is partnering with Allegheny Health Network (AHN) and its newly opened Autoimmunity Institute — based in Pittsburgh, Pennsylvania — to study the costs of autoimmune disease to patients in the U.S., including that of just getting a correct diagnosis.
AARDA, a non-profit that addresses autoimmune disorders as a disease category, is providing seed funding for the study.
There are more than 100 known autoimmune diseases, including multiple sclerosis (MS), rheumatoid arthritis, Crohn’s and Graves’ disease, Sjögren’s syndrome, lupus, psoriasis, and myasthenia gravis.
The AHN Autoimmunity Institute, with its hub at West Penn Hospital, is a research center that aims to provide multi-disciplinary and multi-specialty care to patients living with autoimmune diseases, who often need to consult with doctors specialized in different fields. It features exam rooms, a dedicated infusion suite, and a research laboratory.
Specialties covered include allergy and clinical immunology, cardiology, dermatology, endocrinology, gastroenterology, infusion therapy, nephrology, primary care, pulmonary and rheumatology.
“A multispecialty approach to diagnosis, patient care, and research has been a long-standing need in this country. Our health system is set up in compartments and does not work well for patients with autoimmune disease as these patients often need to see several specialists and are left to coordinate their own care,” said Virginia Ladd, executive director of AARDA who will serve on the steering committee for the Autoimmunity Institute, said at its opening ceremony, according to a news release.
“It has been a long-term goal of our organization that such an institute be established to serve the autoimmune patient population. We are especially excited that the institute will provide diagnostic triage as our study found that on average patients see an average of four physicians over three years before receiving an accurate diagnosis, and over 62 percent were told that they are too concerned with their health or that their symptoms are in their head,” Ladd added.
AARDA goal for the Autoimmunity Institute is to found not only a center of service to patients in the region, but also one that can serve as a model for similar facilities nationwide of service to patients with autoimmune diseases and researchers working in the field.
Linda Sasser
In my 20s (1960s), I began to be plagued with stumbling, bumping into objects, and sudden weakening knees or ankles. When I sought treatment for cracked ribs, torn ligaments, broken toes, doctors told me I was clumsy and poorly coordinated. In my late 40s, optic neuritis (diagnosed by an opthamologist) plagued me for six or so weeks. In the next decade I experienced bizarre visual and aural episodes alongside the gradually accumulating gait, coordination, and balance difficulties. In my 60s I experienced episodic failure of the swallow reflex, diminished fine motor control as the earliest difficulties continued. In these many years, I sought advice from a variety of physicians who responded with "hmmmp", gave me an EKG,referred me to PT, told me to take Yoga, or treated me as if I were imagining or attention seeking. Finally, age 70, I self referred to a neurologist at a major teaching hospital. After lumbar puncture, blood test for viral diseases, and MRIs I was diagnosed with MS. Since then the slow progression of symptoms has continued without new lesions on my brain and spinal cord. Because of my age (78 at present)doctors have prescribed no DMTs. In my case, MS proved illusive to diagnose.As all my physicians until recently have been male, I suspect gender bias may also have been involved.What form of MS do I have? I do not know.
Robert J Steadman
Stem Cell Therapies
Thursday, May 31, 2018
11:10 AM
To: All State and Federal Congressman and Health Agencies
There seems to be a great demand in the USA for treatments for people with Multiple Sclerosis out side the normal box.
Stem cell therapies are quickly on the rise for Cancer patients and to help the healing for orthopedic conditions. While consulting the web and organizations and the mention to certain state agencies and federal legislatures this style of rejuvenation falls flat. These treatments are being used abroad where they are basically state governed and do not need special approval thru Federal protection agencies such as the FDA.
After communication with the FDA it was said that this treatment may cause tumors. Placenta and cord blood seem to be the two culprits. Mesenchymal, Neural and Hematopoietic cells were not mentioned as a problem area. The fact that the FDA has no real oversite in this area they still seem to be making rulings. Most troubling to me and others is the fact that these cells after being removed from the body must be put back in the same day and may not be fully manipulated. By doing so the patients treatment is being restricted.
Our current medical community is in a no win situation. They are forced to prescribe DMT's(disease modifying therapy's)
that don’t cure the disease but prolong it. According to sources we have approximately 3.3 million Americans. Of those Americans the median age is nearly 38 years old. Why is this important you ask? The reason being that approximately 133 Million people have one or more chronic diseases that are incurable or ongoing many for life. This is about the same number of our active military. Nearly eighty one million people have multiple conditions. Many of these folk would never be able to join the military to keep us strong, get and keep good jobs or live a life with dignity.
It is my contention from the medical personnel I've spoken with that stem cell therapy may be the best answer and in the long run the cheapest most effective disease fighter we know.
Please remember the people you know personally or know of that have been asking our communities to come up with something that works and we are so close.
I do believe oversight is needed by the state or federal level to insure the patients are receiving what they are being promised and understand this is not necessarily a one time occurrence. The probability of rejection would be minimal due to the fact that it comes from the source. Furthermore I believe the cost would be lowered up to eighty percent of the DMT's we are currently being given just to prolong the deficiencies within. Thank you for taking time to read this and support in this matter would be greatly appreciated. Your replies would be welcomed. [email protected]