Welcome to NA News Patient Special Issue
We continue to hear of new patients, families and carers from all over the world who are affected by neuroacanthocytosis (NA). This special issue of NA News is devoted to their stories, including the therapies and the pastimes they benefit from. In this issue we also remember patients who have sadly died. If you know someone who may be or has been affected by NA, please contact me at ginger@naadvocacy.org. See also the symptoms described in the margin to the left and let your doctor know about the free blood test that may offer a confirmed diagnosis. If you would like to report the death of an NA patient, either recently or in the past, please do not hesitate to get in touch. The NA News Issue 16 French version and NA News Issue 16 German version are both now available.
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Patients: Asia & Australasia
We hear from Mardi Williams (pictured) in Melbourne about her hobbies and exercise routine, and we also learn of Arshad Mahmood in India, whose brother writes to say that Arshad is experimenting with homeopathic treatments.
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Patients: Europe
Ernesto Montero from Caceres in Spain is helping care for his two brothers and sister with NA: David, Mario and Pilar. Alessio Fagrelli meanwhile has traveled to Italy where his brothers Riccardo and Fabio have NA and are cared for by their mother. Ernesto and Alessio have also recently met with NA patient Alex Irvine in London (pictured). European NA patients and their parents please note: NA News in French and NA News in German are now available.
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Patients: The Americas
We hear from Kristi Curtis in Indiana who benefits from exercise and drills in dexterity and is learning a new technique to improve her speech. Jon Pedersen in Virginia, meanwhile, has moved to an excellent assisted living facility in Virginia and Mark Williford reports on his active schedule, including water aerobics and volunteering activities in Florida. In Puerto Rico Nidia Santiago (pictured) is adapting to the changes imposed by living with NA, and Ed Ayala tells us about his recent writing work. In California, Sanjay Madan describes the activities that he finds most beneficial including meditation, mental exercises and memorising Biblical quotes.
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Patients: UK & Ireland
From the UK we get updates from Susan Hills near Darlington, from Alex Irvine in London, from Essex patients David Nicholson and Sean Mitchell, and from Lee Pickford also in Essex who was diagnosed following the free Western blot test. We also hear from Mervyn Curry who has joined a Northern Ireland rare disease group, and from Pete Clark about his allotment work.
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In Memoriam
We remember four NA patients who have very sadly died: Ming Sun Lau, Paul Beaupre, Alejandra Pando and Rob Ashford. Many thanks to their families for contacting us with the information. From Australia, Rob's sister Raine Petersen encourages you to to get in touch if you'd like to talk about families and NA.
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