As many of you know, we spend much of our time outreaching to other families affected by HLH. Several years ago we learned of a young woman named Zaza. Her poise and grace in her Journey with HLH captivated us. Zaza, originally from South Africa, was getting ready to attend University in the UK when her symptoms first arose. Throughout her journey she not only fought against HLH, but she rose to the occasion and strove to bring awareness about HLH and the importance of blood donations.
Zaza gained her angel wings on November 26, 2016.
Zaza's mother Daphne has been so generous to send us her book Untimely Departure, Zaza Nkosi and the Fight Against HLH (ISBN:978-0-620-76592-3) and we will continue to share it with others to help inspire action against HLH and so Zaza and other HLH Angels won't have died in vain. Daphne has dedicated herself to opening the Zakithi Nkosi Clinical Haematology Centre of Excellence to continue the fight in Zaza's name and to provide others with better treatment options for HLH and other hematological diseases and disorders. Copies of the book will be available at this years annual clay shoot on May 18th.
We are humbled by Daphne's invitation to attend and her extension of hospitality. We are honored to be joining Zaza's family and the dedicated individuals who have helped make this building a success on the ceremonial opening of the Zakithi Nkosi Clinical Haematology Centre of Excellence June 1st in South Africa. The Zakithi Nkosi CHC will be part of the The Chris Hani Baragwanath Hospital network. C.H. Baragwanath Hospital is the 3rd largest hospital in the world, occupying around 173 acres (0.70 km2), with approximately 3'200 beds and about 6'760 staff members.
Some of you have known about this for some time, and others are just finding out now. It has bittersweet for us in sharing, because most respond with, "Africa!!! That's so exciting!" or "I wish I could go to Africa".... So while we should be "excited" as many would be traveling to Africa for the first time, we have found we are excited in a different way than most expect us to react. We have never traveled this far or been to Africa, but to be "excited" is not our first thought when it comes to this next chapter in Eric's Journey. We are so unbelievably honored to be a part of this day to honor Zaza as well as this historical moment in South African medical history. But please do NOT forget that the reason for this hospital and increased medical care is because someone lost a daughter, a sister, an aunt, a cousin, a friend.
We never got to meet Zaza. We never got to speak to her. And if it wasn't for a mother who unselfishly gives her all to this cause beyond her job and all of her other duties, we would not know about Zaza. The future of HLH treatment in South Africa would cease for years to come. While we are certain we will enjoy our time there and we will celebrate Daphne's success and Zaza's inspiration, please do not forget that we must continue on this journey so others don't have to lose a loved one to this disease!
We look forward to honoring Zaza and celebrating Eric's life with you all at Eric's Clay Shoot on May 18, 2019.
Thanks to my buddy Bryan, today I had the opportunity to speak to 60 first year Med students at Rutgers University. I was invited to speak about my diagnosis, inpatient/outpatient experiences and explained the disadvantages and disabilities after HLH treatment and living with Stills Disease. Amanda was able to explain more of the medical aspects of things from when I was sedated.
I was able to teach them some of the long term effects of the diseases and medications that affect my joints, organs and mobility on a daily basis. Some of these occurred because it took a long time to get a diagnosis and start treatment. Stills Disease is often referred to as an invisible illness because on the outside I look quite healthy, but on the inside my body is still attacking itself every day for the past 6.5 years. There is no cure and I have been unable to get to full remission with current available medications.
The students also learned how difficult it can be for patients like me to maintain a full time job while navigating the healthcare system, insurance company, seeing specialists, getting labs, testing and pre-certs just for a few meds to keep me alive.
I am truly grateful for this experience and hope it helps even just one student along their journey to becoming a doctor.
Eric was diagnosed with HLH & Still's Disease at 27 years old in 2012 and given only a 5% chance to live. This is his journey.
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