Surviving and Thriving With an Invisible Chronic Illness_How to Stay Sane and Live One Step Ahead of Your Symptoms
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Peyronie’s Disease
http://www.peyroniesassociation.org
Phenylketonuria
http://www.npkua.org
Phenylketonuria and Allied Disorders
http://www.go-ipad.org
Pituitary Disorders
http://www.pituitary.org
Prader-Willi Syndrome, Abnormal Chromosome 15 (15q11-q13).
http://www.fpwr.org
RASopathy Syndromes
http://rasopathiesnet.org
Sanfilippo Syndrome
http://www.bensdream.org
http://www.curesff.org
Sanfilippo Syndrome, Mucopolysaccharidoses (MPSIII)
http://www.jonahsjustbegun.org
Sarcoidosis
http://www.stopsarcoidosis.org
Short Bowel Syndrome/Intestinal Failure
http://www.sbscure.org
Sickle Cell Disease
http://www.asapbeinformed.org
http://atlantascar.com
http://www.boldlipsforsicklecell.com
http://sc101.org
Skin Diseases, Ichthyosis
http://www.firstskinfoundation.org
SYNGAP1
http://www.bridgesyngap.org
Tuberous Sclerosis Complex
http://www.bcureful.org
Undiagnosed
http://www.undiagnosed-usa.org
Wolf-Hirschhorn Syndrome and Related 4p Conditions
http://www.4p-supportgroup.org
References
Ally, patient, in discussion with the author, November 2014.
Dawn Wiggins, licensed marriage and family therapist, in discussion with the author, February 2016, March 2016, February 2017.
Friedlander, J. 2012. Business from Bed: The 6-Step Comeback Plan to Get Yourself Working After a Health Crisis. New York: Demos Health Publishing.
Jacqueline, I. 2017. “Rare Diseases: Facts and Statistics.” https://globalgenes.org/rare-diseases-facts-statistics.
Lauren Stiles, president and founder of Dysautonomia International, in discussion with the author, November 2014.
Paula Peena, mother of patient, in discussion with the author, March 2016, September 2016.
Shire Pharmaceutical. “Rare Disease Impact Report: Insights From Patients and the Medical Community.” https://globalgenes.org/wp-content/uploads/2013/04/ShireReport-1.pdf.
Suris, J. C., P. A. Michaud, and R. Viner. 2004. “The Adolescent with a Chronic Condition. Part I: Developmental Issues.” Accessed April 2017. https://www.ncbi.nlm.nih.gov/pmc/articles.
Travis Love, patient, in discussion with the author, November 2014.
Tricia Holderman, patient, in discussion with the author, November 2014.
Yang, Y. C., C. Boen, K. Gerken, T. Li, K. Schorpp, and K. M. Harris. 2015. “Social Relationships and Physiological Determinants of Longevity Across the Human Life Span.” PNAS 113(3): 578–83.
Ilana Jacqueline is author of the award-winning blog Let’s Feel Better. She started the blog at age twenty-two to share her humbling, hilarious, and heartfelt experiences coping with chronic illness. From full-contact fights with skull-cramping migraines to making peace with being a human pincushion, she writes boldly and unabashedly about breaking down, getting back up, and pulling off the bandage that is “coming out” about the shame and frustration of living with chronic illness.
Jacqueline is a health journalist and professional patient advocate whose work has included writing for publications like Cosmopolitan and The Huffington Post on the patient experience, as well as working for health care companies and patient advocacy groups as a consultant and advisor. She has a personal connection with the patient community, as she has been a patient with complex chronic illnesses throughout her life, including immune deficiency, dysautonomia, gastroparesis, and an adhesion disorder.
As a health advocate and regularly interviewed expert on chronic illness, Jacqueline looks to help patients advocate for themselves at their most vulnerable moments. She is currently working on multiple projects to help connect chronically ill patients with remote employment opportunities, financial and emotional support, as well as creating new programs for patient empowerment and awareness efforts. Jacqueline lives with her biochemist husband and literally the cutest apricot poodle you’ve ever seen in Boca Raton, FL.