Showing posts with label Research. Show all posts
Showing posts with label Research. Show all posts

Monday, May 22, 2017

The Rebel Patient: DEDICATED To Drs. Amy Reed, Hooman Noorchashm, and SlaySarcoma.com

The Rebel Patient book is dedicated to Amy Reed, MD, PhD, and her advocate husband, Hooman Noorchashm, MD, PhD, for being tireless voices for patient safety, women's health, and advocacy for those who either lost their voices or weren't being heard. They spearheaded a compelling fight for patient safety that was waged by the power morcellator medical device used in routine gynecologic hysterectomy. 

Sparked and glittering with lots of God's light amidst the suffering, Amy just celebrated Mother's Day AT HOME with her six beautiful children!


 During laparoscopic surgery, the morcellator device was inserted through small abdominal slits, to chew up, grind up, and then unavoidably splat the abdominal wall with potential cancer cells. And in Amy's case, cancer is cancer and the statistics don't matter if it happens to you. No statistic is worth the iatrogenic up staging of cancer to a 'metastatic' spread of impending doom. Yet Amy, most thankfully to God, is a survivor who has lived to tell more than just a tale of patient safety, women's health advocacy and medical marvel.

 The story of these brave and relentless people is one of love and morals. Besieged with a fateful blow after going in for routine gynecologic surgery, up staged with aggressive cancer that was inflicted by the surgeon(s) who did her case, then denied medical standards in place to prevent future deaths by morcellation, her story still wasn't over. She won't stop fighting. Her husband won't stop advocating. And we are so grateful for that!

 A love story and patient battle rages on, in a frequently-updated Change.org petition that we have been promoting for three years.

The Rebel Patient will donate a portion of book sale proceeds to SlaySarcoma.com, for research on the aggressive leiomyosarcoma. Their site says,

"Together, we can make a difference.

In October of 2013, Amy Reed, a physician and mother of six underwent surgery for what her doctors believed were uterine fibroids.  Eight days later she received a call no one ever wants to get.  "The pathology came back—you have cancer."  Amy was diagnosed with leiomyosarcoma just a year after the birth of her youngest child.  This cancer, which can masquerade as a fibroid, is aggressive, and often resistant to common cancer treatments such as chemotherapy and radiation." 

 YOU CAN HELP:

  • You can donate to slay sarcoma here.
  • You can sign the Change.org Petition here.
  • You can Join The Good Doctors' thank-you to those who saved Amy's Life by performing CPR for 50 minutes, putting her on a bypass machine, operating on a large abdominal tumor and resuscitating from bleeding (see dedication video here), then recovering her in the UPenn SICU so that she could: 

...defy all odds and Celebrate Mother's Day 2017 with her Six Beautiful Children! 

What a Reminder:
Never Underestimate the Power of God!

  • Go to June 17, 2017 Luncheon to Benefit Cancer Research via SlaySarcoma.com!


SLAY SARCOMA!


  • And Slay Sarcoma!
  • Oh! And tell all your friends NOT TO USE THE MORCELLATOR for gyn surgery, because it's not worth the risk to lose your life like other women have!

We believe in the value of every breath and the benefit of each pen stroke waged by Dr. Hooman Noorchashm in support of his bride and mother of his children! We believe there's no stronger advocate in the US who has been a stellar star advocate for a patient! To this end, we are happy to announce that a portion of each sale of The Rebel Patient book will be donated to SlaySarcoma.com in pursuit of efforts to advance cancer research of the uterus.


"Father God,
We ask your continued blessings to abound in this family, and an outpouring of helpers and research supporters to be established and maintained." ðŸ™Œ 

Won't you help?

                    Why?

                                                 Because no one can tell us when it's our time to die.

~ ~ ~~ ~ ~

Additional Articles by Dr. Margaret Aranda

 

~ ~ ~

Read Dr Margaret Aranda's Memoirs:

Age 1: A Baby in the Sky for Father's Day
Age 2: The Making of a Woman Intensivist
Age 3: In the Blink of a Car
Age 4: Respond, Don’t React
Age 5: A Baby on the Edge
Age 6: Glistening in the Moonlight
Age 7: The Pigeon Boy, The Suction Bush and The Darkness
Age 8: Selling Cupcakes
Age 9: Sitting on the Edge of a Cave

~ ~ ~

Follow Me: Let's Tweet  and be a FB Caring Friend, too!
LIKE my Public Figure FB Page if you will, please!




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Join The Rebel Patient on Twitter and Facebook

  Follow Dr Aranda on Twitter | Facebook | LinkedIn | TheChronicLifeDiet.com\ | The MD, PhD Is In


We have to fight to live. And we need your help now.

... and God Bless You.
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Wednesday, March 9, 2016

CLINICAL TRIALS: HIGHLIGHTING CHIARI TYPE I

The Focus For Invisible Illnesses and Disabilities: SOLUTIONS

 by Dr Margaret Aranda

Instead of accepting your illness or malformation, have you given some thought to participating in a clinical research study? The goal is for doctors and scientists (or physician/scientists, the MD, PhDs) to learn from you, to increase the knowledge base, so that doctors can help the next person.

It is considered to be a very selfless and benevolent thing for a patient to do, an honorable and respectable decision to make. We are all focused on "Solutions for the Future" by learning from today. It could mean someone else's "miracle" tomorrow.


Image. MRI Sagital cut of Chiari Type I Malformation. Look at the ARROW ~ the Arrow points to an area of the bony brain, the uncus, that the actual brain itself is herniating down into, below into the spinal cord. Ouch! Not only does this cause pain and headaches, but it blocks the cerebral spinal fluid (CSF) from being passed down the spinal cord. The head would blow up if it was a baby with head bones that are pliable and have not fused together yet. But in adolescents and adults, a drain is often needed to re-route the CSF from the brain to the abdominal cavity, where it gets absorbed by the body.



Participating in a Clinical Study is one way to contribute to the amount of medical knowledge that physician/scientists have in their own armamentarium against illnesses, syndromes, and anatomical malformations. Have I ever been a patient in a Clinical Study? Yes. Have I ever been the Principal Investigator who wrote the original study that went to the Institutional Research Board (IRB) for approval? Yes. Have I ever written the National Institutes of Health (NIH) to apply for a grant to do such research? Yes. $3 million worth. Even amongst the MD, PhD researchers, this is just grand.

Have I ever sat on an IRB and pored through research proposal after research proposal to put in my own vote on whether it should or should not be approved? Yes. Have I stopped certain studies from being approved, based on my experience as an anesthesiologist and Critical Care doctor? Yes.

Have I ever sat on a Hospital Ethics Committee that looks at all aspect of ethical questions that arise from patient care or research? Yes. I was a member of the Ethics Committee at the University of Pennsylvania, and I believe that I was asked to be placed there because I had a reputation for my high sense of ethics.

Can I vouch for each/any of these researchers? No. They aren't me. I could only vouch for myself. But this is what the NIH is funding, these are the MDs and PhDs and MD, PhDs that have dedicated a fair amount of "headache" time just to write up a clinical study protocol and get it through their own IRB AND get it funded through the NIH. So, I gotta hand it to them ~ They must have dedication.

I don't expect the general public to know how to look up the available Clinical Trials that are opened to receive patients, and some studies open and close with changing schedules depending on a multitude of reasons.

So, here's my MEDICAL DISCLAIMER: Not intended as an endorsement, recommendation, or suggestion for any one patient, because I have not met you in person. Not responsible for any adverse effects whether due to studies being closed, the researchers not accepting you, the study being in another city or country, pain, suffering, or side effects from being a research participant, or providing you with this list. You are responsible for yourself. This is public information that any one can access; I am only simplifying the access for you here. If you proceed further with contacting any person on any study listed, you do so at your own risk, absolving me of any responsibility at all.

Such is the world that we live in, and all we are doing is trying to help find SOLUTIONS.  In my opinion, this is an open door to a new world of clinical research that has been largely untapped because of lack of awareness, knowledge, or inspiration. Bon voyage!


1. Genetic origin of smaller lower skull gene.
ClinicalTrials.gov identifier: NCT00004738
Contact: Gretchen C Scott, R.N.
Email: SNBrecruiting@nih.gov
WEBSITE: Clinical Study on Genetics of Chiari

2. DECOMPRESS Study: Compares superiority of autologous vs non-autoloous grafts for decompression surgery.
LOCATION: Phoenix, ARIZONA
ClinicalTrials.gov Identifier: NCT01667770
Contact: Madelon Petersen, RN 602-406-3246
Email: madelon.petersen@dignityhealth.org
WEBSITE: Clinical Study on Decompression

3. A Prospective Natural History Study of Patients With Syringomyelia.
ClinicalTrials.gov Identifier: NCT01150708
Contact: Gretchen C Scott, R.N.
Email: SNBrecruiting@nih.gov
WEBSITE: Clinical Study on Natural History

4. Prenatal Surgical Repair of Fetal Myelomeningocele (PRIUM).
ClinicalTrials.gov Identifier: NCT01983345
LOCATION: Paris, FRANCE
Contact: Jean-Marie Jouannic, PUPH Phone: 0033144735228
Email: laurence.lecomte@nck.aphp.fr
WEBSITE:Clinical Study on Surgical Repair of Fetal Myelomeningocele

5. Efficacy of Acetaminophen in Posterior Fossa Surgery.
ClinicalTrials.gov Identifier: NCT02532322
LOCATION: Washington, DC
Contact: Srijaya K Reddy, MD, MBA (202) 476-2025
Email: sreddy@cnmc.org
WEBSITE:Clinical Study on How Efficient Acetaminophen is in Posterior Fossa Surgery

6. Treatment of Infected Surgical Wounds With Negative Pressure Topical Therapy and Instillation (With or Without Antiseptic) Versus no Instillation (PTN-INSTILL).
ClinicalTrials.gov Identifier: NCT02500875
LOCATION: Bologna, Italy
Contact: Paolo Chiari
Email: paolo.chiari@aosp.it
WEBSITE: Clinical Study on Infected Wounds

7. Fetoscopic Meningomyelocele Repair Study (fMMC).
ClinicalTrials.gov Identifier: NCT02230072
LOCATION: TEXAS Children's Hospital
Contact: Michael Belfort, M.D. 832-826-7375
Email: belfort@bcm.edu
WEBSITE: Clinical Study on Fetoscopic Meningomyelocele Repair

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Dr Aranda's Short Stories

Age 31: The Color Blue
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