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I was diagnosed with RA 2010 was on research for
Awhile then taken off put on enbrel then taken
Off and put on humira. They took DNA test but
I was not given the results. Also I do not
Know what medicine I was given. I walk on tread
Mill at the YMCA 3 miles 3 times a week. I get
Out of breath but keep going, legs hurt, but it
Okay because it took a long time for doctors
To find it and it took a naturalpath to know what
To look for. Why??? I went from August. 2009
To January 2010 finally went to natural path and
Fifteen minutes had results. There is so much to
This story so walking May or may not be the best
Thing but mind over matter hope it keeps working
For me.
This is one of the more frustrating issues of being a PRD – that it’s complicated and we don’t have answers. Symptoms and how you feel are a reality, you learn to deal with them, however difficult it may be. When you search for solid answers, there are few. You ask a question and get a list of possibilities, conflicting answers, a shrug of the shoulders or just simply ignored. It’s like throwing a stack of papers in the air, waiting for them to fall and then being told to pick one.
I am so glad we are pushing forward with the patient story. So glad to have a Foundation that represents and speaks for me, the patient. Hopefully, one day.
Kelly, you’re simply amazing !!! Truly amazing !!! As a professional in the field of deafness and a fellow RD sufferer, I am continually amazed at your keen intellect coupled with tremendous compassion.
May you have a blessed and productive 2014. May you find a combination of treatments that improves your quality of life as we all wait for a cure !!!!
We are all graced with your care and continued commitment. Thank you for working with us, the medical community, and the public, tirelessly, for a better understanding and treatment of RD
xo
Sally
I’ve often thought that there has been a rather specific pattern to how my disease “flares” and how it has progressed. Through patient stories here and via an online support group I am in, I have found that my progression/symptoms/general story and patterns mirrors a just a few peoples experiences. While the debilitating pain is universal to all peoples experiences, there seems to be only a few people that experience things the same way I do. When I read these I usually exclaim “Yes, exactly!”
I recently participated in a research study through the local university, and one of the questions they asked was who else in my family had rheumatoid disease. I told them no one. They asked who else had an auto-immune issue. I told them no one. Nothing. I am one of those with absolutely no family history that we can trace back to the last several generations. (Of course when I first started asking my aunts and uncles, I was told “Oh yeah, grandma had that in her hip! Lol!) I am convinced that at 48, mine was brought on by hormonal changes, and I am hopeful that when those calm down, maybe my disease will go into remission. In cases though where it is genetic, it seems like we should be able to find the cause, and then the cure. We need to keep pushing for research! Thanks for your efforts Kelly!!
Kelly,
I don’t have an issue with the vast majority of the content in this post, but as a regular RA Warrior reader, and also a geneticist by training, it’s only fair to warn you that the title you’ve chosen is inconsistent with the entire state of current cancer genetics. In this post, you’ve relied on a single comment made by a Stanford rheumatologist, who does himself a disservice by broadcasting his lack of familiarity with present-day cancer biology and genetics.
The statement made by Dr. Robinson, also found in reference 1 is: “In cancer, a single genetic biomarker can completely guide treatment because that single gene is causing the disease.” But in fact, cancer is a very heterogeneous disease, both within and between patients, whether of the same tissue origin or not. About the only example of a cancer being due to single gene is that of chronic myelogenous leukemia (CML), which in almost every patient carrying this disease involves a fusion between BCR and ABL genes. As a single gene cancer, it’s highly treatable, by one of the very first magic bullet drugs on the market, Gleevec. But CML is the exception, not the rule, and as more and more cancers have been studied, most recently by genomic technologies, it’s clear that most cancers have multiple “driver” genes responsible for their tumor-causing behavior. Worse, they can mutate continually during their lifetime, meaning primary and metastatic cells may differ genetically, creating havoc for oncologists trying to treat them.
I provide only a single reference to illustrate this point, but it is a gold-standard example of similar findings made by multitudinous labs around the world over the past decade:
“Discovery and saturation analysis of cancer genes across 21 tumour types” by Eric Lander and colleagues, NATURE 505: 495 – 501. In the following sentence one can gain an appreciation of the significant heterogeneity in cancer types:
“A total of 334 gene x tumour-type pairs were found by our analysis to
be significantly mutated. These 334 pairs involve 224 distinct genes.
The number of genes detected per tumour type varied considerably
(range of 1–58), with 7 types having fewer than 10 genes and 2 (breast
and endometrial) having more than 30 (Fig. 2, Supplementary Fig. 5
and Table 1). The specific genes differed substantially across tumour
types, although some pairs of tumour types showed clear similarity,
such as lung squamous cancer and head and neck squamous cancer.”
The bottom line is that, given such vast genetic heterogeneity, the vast majority of cancer patients will require a completely individualized approach to their treatment, making personalized medicine in oncology a very distant dream.
That said, your present title “Genetics & Rheumatoid Disease: More Complicated Than Cancer” is inaccurate at best, and one which most, if not all, oncologists (as well as cancer patients) would find insulting. To be sure, RA genetics is complex; I’ve written about it as you’ve cited, both as a guest post at RA Warrior and on my own blog (http://bit.ly/1f3FbLg). But by almost any scientist’s definition of “complicated”, RA is not more complicated than cancer; both rely on a full understanding of human biology, physiology, and genetics. In fact, the exact opposite might be true. If funding at the level of cancer biology had been provided to rheumatologists to solve RA, we may have found by now that RA genetics is LESS complicated than cancer. At this point, both are complex, so to make any such comparison is really unjustified and futile.
Perhaps the most disturbing fact to come out of this post is that a rheumatologist employed at a world-class academic medical research institution would make such an erroneous statement to begin with, with its concomitant ramifications on the RD community.
– Bob
If you can not convince anyone with clear precise logic baffle them with bull shit. Right doc.
It shouldn’t be “Us versus Them”. Both RA an CA are terrible, debilitating diseases. Both deserve research and attention to ways of predicting predisposition to development and finding treatments that actually help.
As the youngest of 6 children, it’s taken a long time to learn that at least 3 of us have had autoimmune diseases: brother with psoriatic arthritis, sister with fibromyalgia, and my own rheumatoid arthritis. At least 5 of us didn’t/don/t tolerate statin drugs….and there’s more. At the very least, I hope our children and grandchildren will be met with some concern, perhaps getting earlier care for the possible genetic issues.
Has anyone ever wondered why doctors can cure nothing. Not a thing. they can give antibiotics to fight infections but other than that they cure absolutely nothing. A few of the conditions they can not cure and there are hundreds more. Alzheimers, arthritis,migraines,heart disease,cancer,ibs,chrons,parkinsons,diabetes,osteoporosis,and many many more like aids,etc.Why is it that they treat everything while curing nothing. Is it the fact that a cured patient is a former patient.