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Monday, February 24, 2014

Rare Disease 2014 Patients Honor Dr. Nazli McDonnell

It is not to late to sign and share the petition! CLICK HERE

In honor of Dr. Nazli McDonnell,
 In memory of Grace Marie Berardini (1963 - 2009)
and to those who have lost their lives prematurely.

Dr. Nazli McDonnell and Grace Marie Berardini (1963 - 2009)

Our guest blogger today is Cathy Bowen, Founder of Cathy is an outstanding voice and leader in the EDS community.  Cathy along with several other Ehlers-Danlos Syndrome advocates & patients has put into words how Dr. McDonnell has touched their lives. 

Dr. Nazli McDonnell

“Dr. Naz has always put her patients first even before herself or her own health. Their care and wellbeing is her top priority. She has also continued to be involved with the care and treatment outside of the study and even helping numerous individuals from around the world. Many within the Ehlers-Danlos Syndrome community have come to depend on her to be their medical advocate/support in times of medical crisis. She has consulted with many physicians to educate them on the appropriate care and treatment of all those with these rare disorders/diseases. It doesn’t matter if it’s day or night; she has always been available to anyone in need even giving them her personal phone numbers. Through this interaction she has been able successful in saving many lives. Dr. Naz has truly been a lifeline for not only ALL of her patients, but also for anyone who has one of these rare disorders/diseases. To ALL of them, Dr. Nazli McDonnell is a “diamond in the rough”…a unique gem that is truly valued, appreciated and so very loved. I don’t think NIA/NIH realizes the caliber of the person and doctor that they lost in Dr. McDonnell.
We truly wish that we were financially able to support her in her own Connective Tissue Research Laboratory. She has a wealth of experience and vast knowledge that will help her to still make a difference. In a perfect world our HOPE would be to have a cloned Dr. Nazli McDonnell in every single hospital in the world.”- Cathy Bowen, Linda Lenz, Diane Specht and Randi Semanoff ~ EDS Today~ADVOCATES 

Dr. Nazli McDonnell and Linda Lenz

“She is a true professional who practices medicine for all the right reasons.”- Melva Buck

“Dr. Nazli is a true gem for all of the connective tissue disorder sufferers. Please reinstate the study and keep Dr. McDonnell working on the research to help all of us!” 
- Bonnie Heintskill

“I LOVE her!” - Jenae Nixon

“She is an angel!!!” - Karen King

“Please reinstate the study and keep Dr McDonnell! I have FMD With connective tissue features and she was my hope to many unanswered questions for many of us. She’s the best!” - Jill Garibian Jacques

“Dr Naz has also helped my family. She is truly an amazing doctor!” 
- Marie Nenno Redmond

“Dr. NAz really touched my life AND EDUCATED many of my doctors on several occasions. She has been a true fighter for the research of EDS and FMD. It’s one thing to get paid to do research but Dr NAz really cared about each and every one of us. Thank you Naz! You are an angel and our prayers go out to you!” - Bethany Griffith

“Dr Nazli has provided advice, support, and hope for my son. He was recently diagnosed with vascular Ehlers-Danlos Syndrome (vEDS) and we felt so lost. Because it is such a rare disorder, you begin to feel like no one cares. No one cares to learn about my disorder, no one cares to donate money to fund research, no one cares to help, but Dr. Nazli cares. She has touched so many and makes herself available to all the patients, including ones she has never met. She is the Guardian Angel of the vEDS community and she deserves to be held in high regard by her peers for her outstanding care and desire to help others.”
Deborah R.

I first came to meet Dr. Nazli through an email contact that a fellow zebra had posted online. I had just been given the terrible news from my local consultant that my genetic test was positive for Vascular Ehlers Danlos Syndrome, my daughter age 6 was also suspected to have inherited the condition. I was desperate, confused and left waiting by my local health care providers. Although I live in the UK, Nazli provided support, advice and best of all reassurance that there was progress being made into the research of this and other connective tissue disorders. I was comforted to finally find someone with this wealth of knowledge and experience; I cannot begin to explain how important her involvement with our care has been. My daughter and I were enrolled onto the NIA research study and through this Nazli had access to my genetic results and notes. Through Skype contact and phone calls Nazli has kindly made herself available to answer questions and provide important advice. I have not met any other Doctor as truly amazing as Dr Nazli McDonnell, without her kindness and genuine care for her patients I really don't know how I would have coped. She has undoubtedly touched and saved the lives of so many. - Leanne Bell

Dr. Naz is an amazing and caring doctor and has become a true friend. She was so supportive to my son Zak I don't know what Zak or I would have done without her. She is one in a million. EDS is such a devastating disease, and the knowledge and experience that Dr. McDonnell brings to the table is invaluable.- Laura Kleiner

I have had the honor of being in Dr. Nazli McDonnell study and visited her twice at NIA/NiH in Baltimore. She has worked so hard to help us and it saddens me to receive a letter that this study will end. I have FMD with connective tissue features and there has never been another doctor who undertsands me and my conditions and is researching to find answers such as her. She was so close and has years of data. Please don’t let it all go to waste. She is our HOPE for many unanswered questions on some very serious diseases and for the futures of many children affected. - Jill Jacques

My daughter who is 9 has veds we meet Dr Naz when my daughter was 3 years. Dr Naz has always been available to help with my daughter’s care. Any time there is an emergency she's always available to help out even if she's not physical present. She is truly an amazing person. I always felt such a relief knowing she was always there for us. 
Melissa Rosales

My daughter, Vairon, has VED. Dr. McDonnell has been following her for many years. Anytime Vairon would have a medical problem she was able to contact Dr. McDonnell and she would advise her. Last year Vairon had surgery at Johns Hopkins Hospital and Dr. Nazli was in the OR with her throughout the surgery. She was very supportive and comforting to Vairon and myself during that difficult period. She is Vairon's Guardian Angel. She has compassion for her patients and has made herself available to them. She understands their struggles and devoted herself to their cause. I only hope and pray that we have not lost her. - Candice Templin 

“It's such an injustice losing Dr. Naz that it truly makes me sick to my stomach. NIH/NIA has no idea what they've lost. Dr. McDonnell is just as important to all of us, as that study is. In my 17 years advocating for those with EDS, I've seen her in action, she is the ONLY doctor willing to step up to the plate and bat for all her patients no matter if they are her patients or not. There is a second reason why to my wish that I could clone her and put her in every hospital in the world. The first is for the benefit and safety of all EDS/CTD/ALL patients. The second: is for me. Dr. McDonnell has restored my faith and trust in a physician. My fear for the last 17 years hasn't been if I ever got a disease or not, it has been if I would be able to find a doctor that I could ever trust enough or have enough faith in, to be able to put my life into their hands. Knowing everything I do about Dr. McDonnell, she is someone that I could trust with my life. She is that doctor that I wished my son David could have been able to have. Even if the outcome turned out to be the same, as least he would had the best doctor treating him, that's all any of us want…a chance!!! Dr. Nazli McDonnell you have my utmost respect and admiration." -Cathy Bowen ~ EDS Today ~ ADVOCATES
“Dr. Nazli McDonnell has personally helped my family, we are so grateful to her.” - Julie Hemmerich-Buster
“Dr. Naz has helped me more than I can say. I know I’m here today because of HER, she is awesome!!!” - Patti Melcher
“She is a LIFESAVER! I love her.” -Jenae Nixon
“Dr. Naz has saved my families and my life more than once. She has actually spoken on speakerphone from my cell phone to the doctors at Cleveland Clinic in the ICU trying to help with my mother’s care. This was after they had discharged her and then she was readmitted in her second helicopter ride there within five days. Yes, Dr. Naz fights for us no matter who she is talking to, she let us call her on her personal cell phone for help any time of the day or night.” - Susan Rosenow Ginley

Dr. Nazli McDonnell "Our Hero"

1 comment:

  1. Dr. McDonnell discovered an AVM in my sons brain two years ago at her clinic /study in Baltimore. He was there for an evaluation. She rushed him to Johns Hopkins to the only vascular surgeon she was comfortable with re the Vascular EDS. She also recommended the Gamma Knife procedure which was performed at UPMC in Pittsburgh by Dr. Dade Lunsford. Had this malformed mass of arteries and veins ruptured I would not have my son today. Thank you Naz. xoxoxox