Tuesday, March 27, 2007

Hope Springs Eternal - PRAY!

Hope really DOES spring eternal. I was diagnosed with pulmonary fibrosis, for which there is no cure and very little effective treatment, two years ago. Since then I have struggled through many painful treatments on a difficult program employing Avonex and corticosteroid treatments, but while we THINK this regimen has slowed the progress of the disease, it has not halted it. Most people diagnosed with PF live between five and seven years, and the end is not pretty. Fibrous tissue forms in the lungs and gradually strangles off breathing pathways.

Today we learned of a brand-spanking-new breakthrough out of Rice University in Texas. Dr. Richard Gomer, professor of biochemistry and cell biology, has isolated a naturally occurring blood protein that prevents dangerous scar tissue from forming. The protein, which occurs naturally in our blood, has been used in tests on animals that were predisposed to developing fibrotic disease in the lungs. Serum amyloid P, or SAP, is actually WORKING to stop the progress of fibrotic disease in animals. Tests found that SAP treatment protected animals from developing dangerous scar tissue. This is the FIRST treatment of its kind.

This drug could potentially save the lives of people suffering from Cystic Fibrosis, Pulmonary Fibrosis, Cardio Fibrosis, Scleroderma, and possibly others.

Right now a company in Pennsylvania (Promedior Inc.) is engaged in animal testing, but has not yet set a date for the first human clinical trials of SAP.

If this treatment becomes available before the disease moves in many patients (like myself) who are currently staving off danger, we could survive. If SAP becomes available to humans the damage done to our bodies by PF will remain, but it will cease. That simply means this: we live. Unfortunately drugs are notoriously slow in coming to market in the US.

Since being diagnosed my life has been a weekly pattern of hope: shots, back pounding that is painful but necessary, exhaustion and other by-products of the treatment, and dim optimism that the torture will buy me enough time to make it to a breakthrough. The last hopeful treatment trial (in which I am still a participant) is showing that PF is slowed by these rather brutal treatments, but not nearly as much as we'd hoped. Yet hope we still do, and hope we will continue to do. Even those, like myself, who caught this disease early live with pain, side effects, and the grim reality that so far we hope in vain. We exist under the droning mockery of a ticking clock. We cope.

If this bright, shining new possibility proves as bright as predicted our willingness to face misery with determination may actually pay off.

Pray. We need this!

8 comments ]:[ Add your comment:

L.K. Campbell said...

You're in my thoughts and prayers. I hope that this new treatment will work for you.

Anonymous said...

You're in my prayers and thoughts as well. I hope they get this new treatment rushed into human trials!

Tempest Knight said...

I hope this new treatment is the true answer to your prayers. {{{hugs}}}

jax said...

That's awesome! I hope these medical breakthroughs will get here for you and others with the same ailments! Your talents and perserverance is indeed admirable! Take care of you....

Diana Castilleja said...

I always have prayers to offer to you Chrissy. I hope, deeply hope that this is a treatment that comes out in ample time for not only you, but the many who need it.

BeccaF said...

Chrissy, would you be a candidate for a heart/lung transplant?

I have pulmonary sarcoidosis, which can lead to scarring, but I am in no serious condition at this time. But I know others have had the heart/lung transplant with great success.

Chrissy said...

Lung transplants are used only as a last resort for PF patients now, and thought it does buy a few years at the end... it doesn't provide a solution.

They were more common earlier on in treatment trials, and are still used, but we now know they don't do much more than buy time.

Hopefully I will never get there. :)

your friend in Ohio said...

Chrissy, as always, you are in my thoughts and prayers. I too, hope that this new treatment comes to human trial and on the market soon enough.

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