Perspectives in aHUS – Creating Opportunities & Meeting Challenges – Kamal D. Shah of India

Creating Opportunities & Meeting Challenges – Kamal D. Shah of India
To encourage others to look through a new lens and see multiple facets in the atypical HUS arena, the aHUS Alliance will offer an ongoing series to highlight varied perspectives.  The journey of any atypical HUS patient can provide much insight, and many serve as inspirational stories of ‘rising above aHUS’.  This Perspectives in aHUS article focuses on the contributions of Kamal D. Shah of India, an aHUS patient who demonstrates perseverance (20 years on dialysis, after an unsuccessful kidney transplant), innovative problem-solving (co-founding a better model of dialysis clinics), overcoming incredible odds (surviving the 2004 Indian Ocean tsunami), and demonstrating both compassion and commitment to support others through their own struggles (as organizer of the 1st Indian Dialysis Olympiad in 2015, and key leader within the aHUS Alliance).
Kamal D. Shah, is founder of Atypical HUS India and is co-founder of NephroPlus dialysis centers, which just won the Healthcare Business International – Business Innovation Award for the Best Medical Service Outsourcer at an awards ceremony held in London from April 4-5th, 2017.  Just months ago, Kamal was invited by EURODIS to present points regarding access to medicines at the 11 November 2016 inaugural meeting of the United Nations NGO committee for Rare Diseases (Watch the YouTube version of Kamal’s UN comments).
Kamal was honored in January 2016 as presenter of a keynote speech for the La Renon TANKER Foundation and his selection for their ‘Sake of Honour’ Award.  Kamal was diagnosed with atypical HUS in July 1997 at age 22, and received a donated kidney from his mother a year later.  Little was known then about aHUS recurrence, and Kamal’s renal transplant failed within 11 days, requiring him to go back on peritoneal dialysis.  In circumstances to rival any popular novel, Kamal was literally swept up in the Dec. 2004 Indian Ocean tsunami and the 9.0 magnitude earthquake that devastated an entire region and claimed an estimated 250,000 lives.
Battling multiple infections, Kamal’s choices were limited.   Faced with few options, and given India’s limited access to medical care and dialysis equipment, Kamal returned to hemodialysis but with a new dedication to finding solutions for himself and other dialysis patients in India.  Since then and experienced with 20 years of personal dialysis experiences, Kamal has taken lessons learned to co-found NephroPlus, India’s largest dialysis network provider and to assist other aHUS patients and families in India by founding Atypical HUS India.
Kamal’s innovative approach lead him to organize the Feb 2015 Indian Dialysis Olympiad in Hyderabad, with over 350 participants demonstrating feats that illustrated strength of body and character and served to provide positive insights about dialysis patients.  A role model within both the dialysis and atypical HUS international communities, Kamal exemplifies strength through overcoming challenges, and he continues to advocate for aHUS patients in India and beyond with his collaborative approach to optimizing information and opportunities through global action.   Kamal D Shah is recognized as a key leader among the international aHUS community for his innovative solutions and team approach, and Atypical HUS India is a valued partner in the aHUS Alliance of global advocacy and patient organizations.
Kamal’s Journey
Atypical HUS
Atypical HUS India launches aHUS Registry:
Patient Voices from India
The TANKER Foundation award
NephroPlus – India’s Leading Dialysis Network Provider

Your Story (May 2018 article by By Deepika Rao): His fight with kidney disease is inspiring quality treatment for thousands more.
“Diagnosed with Atypical Hemolytic Uremic Syndrome, Kamal believes that a positive attitude and quality treatment can change lives of those who undergo dialysis.”

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