Monday, July 26, 2010

Please Welcome CCSVI Alliance’s New Website: CCSVI.org

ccs_hor As many of you know, on March 17, 2010, I was diagnosed with and treated for a condition called Chronic Cerebrospinal Venous Insufficiency, or CCSVI.  To read about my experience, click here

CCSVI is thought to be related to multiple sclerosis, such that it may significantly contribute to the development of MS, and such that treatment of the condition through balloon angioplasty or stent placement in the veins of the central nervous system may prevent further neurological damage.  In fact, many patients have even experienced improvements after treatment (but many of us haven’t). 

The MS patient community is a frustrated lot.  Until about 20 years ago there were virtually no disease modifying treatments.  “Diagnose and adios” was the standard approach for doctors.  Then, a series of drugs began receiving FDA approval for their abilities to at least moderately alter the course of the disease in Relapsing Remitting patients.  Very little, however, has been found to be effective for Secondary Progressive, and nothing has been found for Primary Progressive patients.

Even these FDA approved drugs for Relapsing Remitting MS leave much to be desired.  None of them represents anything close to a cure.  The drugs are very expensive, on the order of $30,000 per year or more. The high costs represent one level of unpleasantness. The drugs are administered as a self injection daily, several times per week, or weekly; or they are given by IV. This is a second level of unpleasantness.  Each treatment comes with its own collection of significant side effects, such as flu-like symptoms, heart problems, and even death (to be fair, the flu-like symptoms are much more common than heart problems or death). These side effects represent a third level of unpleasantness. Finally, their effectiveness is highly questionable in terms of stopping disease progression (click here for that report).  Their lack of efficacy for a large portion of the MS population is the final and ultimate shortfall of these treatments.

So, when a fresh idea like CCSVI came along last year, it gave new hope to the MS patient population. However, the medical community insists that every new treatment must be subjected to rigorous scientific evaluation, and rightfully so. Typically, such an evaluation is conducted by and paid for by pharmaceutical companies who stand to make millions if the given treatment obtains FDA approval. Even then, it takes years to obtain such approval.  In the case of CCSVI, there is no single deep pockets organization to drive the research.

Patients are frustrated because they are suffering, and they are piling up irreversible neurological damage every day.  When a potential blockbuster like CCSVI treatment is not immediately made available to them, they get angry, and vocal, and resourceful. On the other hand, medical scientists also become frustrated when patients demand treatments that have not been thoroughly proven through a series of independently conducted, double-blind, placebo-controlled studies.  These scientists have seen so many potential treatments fall be the wayside under such scrutiny.  Some scientists believe CCSVI will endure the same fate. 

CCSVI has become THE hot topic in the multiple sclerosis patient community, and is garnering more and more interest in the medical/scientific community every day.  In response to this interest, and in order to further advance our understanding of the connection between CCSVI and MS, CCSVI Alliance has launched its new website- http://www.ccsvi.org/

The CCSVI Alliance mission statement reads:
CCSVI Alliance is dedicated to educating patients with research-based information, providing tools for patients to advocate for themselves, and supporting medical professionals' exploration of Chronic Cerebrospinal Venous Insufficiency (CCSVI).

In honor of the website launch, check out my new license plate.

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