vhl alliance

Website References

Below is a list of references for all medical information provided on this site. When appropriate links are provided. Abstracts to references published in medical journals can be obtained on PubMed.

What is VHL?

Asher KP, et al., Robot-assisted laparoscopic partial adrenalectomy for pheochromocy­tomas: the National Cancer Institute technique, Eur Urol, 2011 Jul; 60(1):118-24

Asthagiri AR, et al., Prospective evaluation of radiosurgery for hemangioblastomas in von Hippel-Lindau disease, Neuro Oncol. 2010 Jan;12(1):80-6. Epub 2009 Dec 23. PMID: 20150370

Choyke P. Imaging in VHL: What You Need to Know!, Presentation at VHLA annual meeting, October 2014

Collins, D., Information for Genetic Professionals: http://www.kumc.edu/gec/prof/kugenes.html

Dayal M, et al., Preimplantation Genetic Diagnosis, Medscape, November 4, 2013 http://emedicine.medscape.com/article/273415-overview

Giles R; University of the Netherlands, Utrecht; correspondence with the VHL Alliance May 2015

Gupta GN, et al., Robot-assisted laparoscopic partial nephrectomy for tumors greater than 4 cm and high nephrotomy score: feasibility, renal function, and oncological outcomes with minimum 1 year follow-up, Urol Oncol, 2013 Jan; 31(1):51-6

Hoeffel C. Radiofrequency ablation of renal tumors, European Radiology, 2010, 20(8): 1812-21

Maher ER, et al., von Hippel-Lindau disease: a clinical and scientific review. Eur J Hum Genet. 2011 Jun;19(6):617-23. Epub 2011 Mar 9. PMID: 21386872

Lindau RS, et al., von Hippel-Lindau disease. Lancet. 2004, 363:1231-4. PMID: 15081659

Lonser RR, et al., von Hippel-Lindau disease. Lancet. 2003 Jun 14;361(9374):2059-67. PMID: 12814730

Lonser RR, et al., The vestibular aqueduct: site of origin of endolymphatic sac tumors,  J Neurosurgery, April 2008, Vol. 108, no. 4: 751-756)

Maher ER, et al., von Hippel-Lindau disease: a clinical and scientific review. Eur J Hum Genet. 2011 Jun;19(6):617-23. Epub 2011 Mar 9. PMID: 21386872

Matin SF, et al., Patterns of intervention for renal lesions in von Hippel-Lindau disease, BJU International, October 2008, Vol 102, issue 8:940-45

Richard S. von Hippel Lindau, Atlas Genet Cytongenet Oncol Haem 2001; 5(21): 145 -149

Seeger A, et al., Comparison between a linear versus a macrocyclic contrast agent for whole body MR angiography in a clinical routine setting, J Cardiovasc Magn Reson 2008; 10(1):63

Stroke Warning Signs, Together to End Stroke, Strokeorg, http://www.strokeassociation.org/STROKEORG/WarningSigns/Learn-More-Stroke-Warning-Signs-and-Symptoms_UCM_451207_Article.jsp

Online Resources
National Library of Medicine has a list of labs that meet the standards set by CLIA: http://www.ncbi.nlm.nih.gov/sites/GeneTests/lab

National Society of Genetic Counselors has a website where you can find a genetic counselor near you. http://nsgc.org

The US government offers a tool for preparing a Family Health History document to help you and your family assess their health risks and learn to manage them. http://familyhistory.hhs.gov

The Office of Biotechnology Activities maintains a website that contains information on the work of the Advisory Committee to the Secretary of Health and Human Services on “Genetic Testing.” https://auth.osp.od.nih.gov/office-clinical-research-and-bioethics-policy/genetics-health-and-society/sacgt-archives

The Human Genome Institute has a section on Policy and Ethics that deals with the Ethical, Legal, and Social Implications of the Human Genome Project and genetic testing. See http://www.genome.gov/PolicyEthics

VHL in the Brain and Spinal Cord

Addona K. Pancreas and Nutrition: Your Diet for Pancreatitis, Columbia University Department of Surgery Blog RSS. Columbia University Medical Center, 14 Nov. 2012, 05 May 2014, http://columbiasurgery.org/news/2012/11/14/pancreas-and-nutrition-your-diet-pancreatitis

Blansfield JA, et al., Clinical, genetic and radiographic analysis of 108 patients with von Hippel-Lindau disease (VHL) manifested by pancreatic neuroendocrine neoplasms (pNets), Surgery, 2007 Dec;142(6):814-8; discussion 818.e1-2, PMID: 18063061

Corcos O, et al., Endocrine pancreatic tumors in von Hippel-Lindau disease: clinical, histological and genetic features, Pancreas, 2008, 37:85-93, PMID: 18580449

Cunningham JC, et al., An Introduction to Cystic Fibrosis for Patients and Their Families, 6th ed., Cystic Fibrosis Foundation, 2013. https://www.cff.org/PDF-Archive/An-Introduction-to-Cystic-Fibrosis-for-Patients-and-Their-Families/

Find a CF Care Center, Cystic Fibrosis Foundation, n.d., http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/.

Hammel P, et al., Pancreatic involvement in von Hippel-Lindau disease: prevalence, course and impact in the management of patients, Gastroenterology, 2000, 119: 1087-1095. PMID: 11040195

Nutrition Advice & Recipes, National Pancreas Foundation, 2014, https://www.pancreasfoundation.org/patient-information/nutrition-advice-recipes/.

Staying Healthy, Cystic Fibrosis Foundation n.d., 05 May 2014, http://www.cff.org/LivingWithCF/StayingHealthy/.

Toouli J, et al., Management of pancreatic exocrine insufficiency: Australasian Pancreatic Club recommendations, Med J Aust, 2010; 193(8): 461-467.

VHL in the Kidneys

Cho E, et al., Epidemiology of Renal Cell Cancer, Hematol Oncol Clin N Am, 2011 (25): 651-665

Duffey BG, et al., The Relationship Between Renal Tumor Size and Metastases in Patients with von Hippel-Lindau Disease, J Urol, 172: 63-65, 2004. PMID: 15201738

Goldfarb DA, et al., Results of renal transplantation in patients with renal cell carcinoma and von Hippel-Lindau disease. Transplantation, 1997 Dec 27;64(12):1726-9. PMID: 9422410

Joly D, et al., Progress in nephron-sparing therapy of renal cell carcinoma and von Hippel-Lindau disease. J Urol. 2011, 185:2056-60, PMID: 21496837

Kidney Disease Nutrition and Diet, The National Kidney Foundation: A to Z Health Guide, The National Kidney Foundation, n.d., https://www.kidney.org/atoz/atozTopic_Nutrition-Diet.cfm.

Lin H. Diet – Chronic Kidney Disease, MedlinePlus Medical Encyclopedia, U.S. National Library of Medicine, 21 Sept. 2011, http://www.nlm.nih.gov/medlineplus/ency/article/002442.htm.

Living with Kidney Disease, National Kidney Center, National Kidney Center.org, Inc., http://www.nationalkidneycenter.org/chronic-kidney-disease/living-with-kidney-disease/

Matin SF, et al., Patterns of intervention for renal lesions in von Hippel-Lindau disease, BJU Int, 2008 Sep; 102(8):940-5, Epub 2008 May 15, PMID: 18485044

Shuch B, et al., Repeat partial nephrectomy: surgical, functional, and oncological outcomes, Curr Opin Urol, 2011, Sep; 21(5):368-75, doi: 10.1097/MOU.0b013e32834964ea. PMID: 21788903

Steinbach F, et al., Treatment of renal cell carcinoma in von Hippel-Lindau disease: a multicenter study, JUrol, 1995 153:1812-1816

VHL in the Eye

Gorin, MB, et al., von Hippel-Lindau disease: clinical considerations and the use of fluorescein-potentiated argon laser therapy for treatment of retinal angiomas. Seminars in Ophthalmology, 1992 Sep 7(3):182-91

Dollfus H, et al., Ocular manifestations in von Hippel-Lindau disease: a clinical and molecular study, Invest. Ophthalmol Vis Sci 2002, 43: 3067-74. PMID: 12202531

Gaudric A, et al., Vitreoretinal surgery for severe retinal capillary hemangioglastomas in von Hippel-Lindau disease, Ophthalmology, 2011, 118: 142-9, PMID: 20801520

Laser Surgery in Ophthalmology and Cryotherapy, American Academy of Ophthalmology, online brochures, AAO, P.O. Box 7424, San Francisco, CA 94120-7424. 1 415 561-8500. http://www.aao.org

Wong WT, et al., Ocular von Hippel-Lindau disease: clinical update and emerging treatments, Curr Opin Ophthalmol, 2008 May;19(3):213-7, Review, PMID: 18408496

The National Eye Institute (nei.nih.gov) and the National Library of Medicine (www.nlm.nih.gov) are both excellent resources for new terms and treatments.

VHL in the Adrenal Glands (Pheochromocytomas)

Adrenal Disorders, LifeExtension.com. Life Extension, n.d. http://www.lifeextension.com/protocols/metabolic-health/adrenal-disorders/Page-07#dietary.

Asher KP, et al., Robot-assisted laparoscopic partial adrenalectomy for pheochromo­cytoma: the National Cancer Institute technique, Eur Urol, 2011 Jul;60(1):118-24. Epub 2011 Apr 9. PMID: 21507561

Eisenhofer G, et al., Measurements of plasma methoxytyramine, normetanephrine, and metanephrine as discriminators of different hereditary forms of pheochromocytoma, Clin Chem, 2011 Mar;57(3):411-20. Epub 2011 Jan 24. PMID: 21262951

Germain A, et al., Surgical management of adrenal tumors, J Visc Surg, 2011 Sep;148(4):e250-61. Epub 2011 Aug 5. PMID: 21820984

Grouzmann E, et al., Diagnostic accuracy of free and total metanephrines in plasma and fractionated metanephrines in urine of patients with pheochromocytoma, Eur J Endocrinol, 2010 May;162(5):951-60. Epub 2010 Feb 8. PMID: 20142367

Guidelines on Pheochromocytoma and Paraganglioma, J Clin Endocrinol Metab, June 2014, 99(6) 1916-1917

Hydration, “Salt Wasters” And Dehydration, News Articles & Research—NADF, National Adrenal Diseases Foundation (NADF), Aug. 2005, http://www.nadf.us/articles/

Kantorovich V, et al., Pheochromocytoma: an endocrine stress mimicking disorder, Ann NY Acad Sci, 2008 Dec;1148:462-8, PMID: 19120142

Loechner K, ed. Adrenal Insufficiency and Addison’s Disease. NIH Publication no. 14–3054. National Endocrine and Metabolic Diseases Information Service (NEMDIS), Jan. 2014. http://endocrine.niddk.nih.gov/pubs/addison/addison.aspx.

Pacak K, et al., Pheochromocytoma, in Jameson, JL et al., (eds) Textbook of Endocrinology. 6th edition. Elsevier Science Inc., Philadelphia, 2010

Stéphane R. Presentation at the 4th International Symposium on Pheochromocytoma, Paris 2011

Yousef HB, et al., Laparoscopic vs open adrenalectomy: experience at King Faisal Specialist Hospital and Research Centre, Riyadh, Ann Saudi Med, 2003 Jan-Mar; 23(1-2):36-8. PMID: 17146220

Weise M, et al., Utility of plasma free metanephrines for detecting childhood pheochromocytoma, J Clin Endocrinol Metab, 2002 May;87(5):1955-60, PMID: 11994324

VHL and Reproductive Health

Abadie C, et al., The role of pregnancy on hemangioblastomas in von Hippel-Lindau disease: a retrospective French study, 9th International Symposium on VHL, Rio de Janeiro (Brazil). 2010 Oct 21–24

Aydin H, et al., Clear cell papillary cystadenoma of the epididymis and mesosalpinx: immunohistochemical differentiation from metastatic clear cell renal cell carcinoma, Am J Surg Pathol, 2005 Apr;29(4):520-3. PMID: 15767808T

Frantzen C, et al., Letter to the Editor, J. Neurosurg, 2013 March, calling for a larger global study.

Frantzen C, et al., Pregnancy-related hemangioblastoma progression and complications in von Hippel-Lindau disease, Neurology, 2012 Aug 21; 79(8):793-6. PMID: 22875085

Fugueroa E. How to Perform a Testicular Self-Examination, kidshealth.org, Alfred I. DuPont Hospital, Wilmington, DE, and Jefferson Medical Center, Philadelphia

Janovski NA, et al., Serous Papillary Cystadenoma arising in Paramesonephric rest of the mesosalpinx, Obstet Gynecol, 1963 Nov;22:684-7, PMID: 14082297

Lenders J. Endocrine disorders in pregnancy: Phaeochromocytoma and pregnancy: a deceptive connection, Eur J Endocrinol, 2011 Sep 2, PMID: 21890650

Odrzywolski KJ, et al., Papillary cystadenoma of the epididymis, Arch Pathol Lab Med, 2010 Apr;134(4):630-3, PMID: 20367315

Stratton P. Gynecology and Reproductive Health Issues in VHL, 2014 VHLA Annual Meeting presentation

Ye B, et al., Effect of pregnancy on hemangioblastoma development and progression in von Hippel-Lindau disease, J Neurosurg, 2012 Nov; 117(5):818-24, PMID: 22937928

Zanotelli DB, et al., Bilateral papillary cystadenoma of the mesosalpinx: a rare manifestation of von Hippel-Lindau disease, Arch Gynecol Obstet, 2010 Sep, 282(3):343-6, Epub 2010 Feb 16, PMID: 20157715

Hearing Changes and VHL

Butman JA, et al., Neurologic manifestations of von Hippel-Lindau disease, JAMA, 2008 Sep 17;300(11):1334-42, PMID: 18799446

Choo, DI, et al., Endolymphatic Sac Tumors in von Hippel-Lindau Disease, J Neurosurg, 2004; 100:480-487, PMID: 15035284

Kim HJ, et al., Tumors of the endolymphatic sac in patients with von Hippel-Lindau disease: implications for their natural history, diagnosis, and treatment. J Neurosurg, 2005 Mar;102(3):503-12, PMID: 15796386

Kim M, et al., Hemorrhage in the endolymphatic sac: a cause of hearing fluctuation in enlarged vestibular aqueduct, Int J Pediatr Otorhinolaryngol, 2011 Dec;75(12):1538-44, PMID: 21963424

Lonser RR, et al., Tumors of the Endolymphatic Sac in von Hippel-Lindau Disease, NE J Med, 2004, 350:2481-2486, PMID: 15190140

Megerian CA, et al., Evaluation and management of endolymphatic sac and duct tumors, Otolaryngol Clin North Am, 2007 Jun;40(3):463-78, viii. Review, PMID: 17544692

Poulsen ML, et al., von Hippel-Lindau disease: Surveillance strategy for endolymphatic sac tumors, Genet Med, 2011 Dec;13(12):1032-41, PMID: 21912262

VHL and the Liver

Rodrigeuz Gomez M, Neurocutaneous Diseases: A Practical Approach, Butterworth-Heinemann 1987, p. 60

VHL and the Lungs

Klein J, et al., Multifocal microcysts and papillary cystadenoma of the lung in von Hippel Lindau Disease, Am J Surg Pathol, 2007 Aug 31 (8): 1292-6

Healthy Living for the VHL Family

Aberg A. Socialstyrelsen. Rep. no. 53. Sweden National Board of Health and Welfare, 9 Dec. 2011. http://www.socialstyrelsen.se.

Bjørge T, et al., Relation of height and body mass index to renal cell carcinoma in two million Norwegian men and women, Am J Epidemiol, 2004 Dec 15; 160(12): 168-76.

Cho E, et al., Epidemiology of Renal Cell Cancer, Hematol Oncol Clin N Am, 2011 (25): 651-665

Health Guides: Health Is a State of Mind and Body, Health Education. FamilyDoctor, Dec. 2010. http://familydoctor.org/familydoctor/en/prevention-wellness/staying-
healthy/healthy-living/health-guides-health-is-a-state-of-mind-and-body.printerview.html.

Hu J, et al., Diet and vitamin or mineral supplements and risk of renal cell carcinoma in Canada, Cancer Causes Control, 2003 Oct 14(8):705-14

Lipworth L, et al., The epidemiology of renal cell carcinoma. The Journal of Urology, 2006, 176: 2353-2358.

Mann D. U.S. Has 7th Highest Cancer Rate in the World, WebMD. WebMD, 24 Jan. 2011. http://www.webmd.com/cancer/news/20110123/us-has-7th-highest-cancer-rate-in-the-world.

Rini BI, et al., Renal cell carcinoma. The Lancet, 2009; 373: 1119-32.

Sedghi A. Cancer Rates: See How Countries Compare Worldwide, Theguardian.com. Guardian News and Media, 24 Jan. 2011. http://www.theguardian.com/news/datablog/2011/jan/24/worldwide-cancer-rates-uk-rate-drops.

Statement on E-cigarettes, American Lung Association, March 2015. http://www.lung.org/our-initiatives/tobacco/oversight-and-regulation/statement-on-e-cigarettes

Tobacco, World Health Organization (WHO). WHO International, July 2013. http://www.who.int/mediacentre/factsheets/fs339/en/.

Where to Get Help When You Decide To Quit Smoking, National Cancer Institute. National Cancer Institute at the National Institute of Health, 28 Oct. 2010. 27 Apr. 2014. http://www.cancer.gov/cancertopics/tobacco/smoking.

Diet

A Backyard Chef’s Guide to Healthier Grilling, American Cancer Society, May 20, 2013. http://www.cancer.org/cancer/news/features/a-backyard-chefs-guide-to-healthy-grilling.

AICR video summary of this report: http://www.vimeo.com/21464219

Alcohol and Cancer Risk, Fact Sheets: Diet and Nutrition. National Cancer Institute, 24 June. 2013.

Campbell T, et al., The China Study, Ben Bella Books, 2005

Diet and Cancer Prevention: It’s All About Eating Right, Academy of Nutrition and Dietetics, Dec. 2012. Accessed 28 Apr. 2014. www.eatright.org/Public/content.aspx?id=9904

Don’t Use Supplements to Protect against Cancer, Recommendations for Cancer Prevention. American Institute for Cancer Research (AICR), 29 June 2011. http://www.aicr.org/reduce-your-cancer-risk/recommendations-for-cancer-prevention/recommendations_08_supplements.html.

Diet, Nutrition, and Cancer Prevention: The Good News, U.S. National Institutes of Health, various publications are available from 1-800-4CANCER.

Do root vegetables like sweet potatoes count as vegetables or starches, and is it true that all of the nutrition is in the skins?, http://www.boston.com/lifestyle/food/articles/2011/05/02/do_root_vegetables_like_sweet_potatoes
count_as_vegetables_or_starches_and_is_it_true_that_all_the_nutrition_is_in
the_skins/
, May 2, 2011

Dyck, et al., The anticancer effects of Vitamin D and Omega-3 PUFAs in combination via cod-liver oil: One plus one may equal more than two. Med Hypotheses, 2011 May 30. PMID: 21632182

Ehrlich SD. “Omega-3 Fatty Acids.” University of Maryland Medical Center. University of Maryland School of Medicine, 10 May 2011. http://umm.edu/health/medical/altmed/supplement/omega3-fatty-acids.

Espat A. Does Cancer Love Sugar?, MD Anderson Cancer Center. The University of Texas MD Anderson Cancer Center, Nov. 2012. http://www.mdanderson.org/publications/focused-on-health/issues/2012-november/cancersugar.html.

Food, Nutrition, Physical Activity and the Prevention of Cancer: a global perspective, 1997, 2007. http://www.dietandcancerreport.org/

Gnagnarella, P., et al, Glycemic index, glycemic load, and cancer risk: a meta-analysis, Am J Clin Nutr, 2008 Jun; 87(6): 1793-801

Harvard Healthy Eating Plate and discussion, adapted from Willett, Eat, Drink, and Be Healthy, Harvard School of Public Health, 2001, 2008, 2011.

Hydration ‘Salt Wasters’ and Dehydration, News Articles & Research—NADF. National Adrenal Diseases Foundation (NADF), Aug. 2005. http://www.nadf.us/articles/.

The Importance of Hydration, Cancer.Net. American Society of Clinical Oncology (ASCO), http://www.cancer.net/navigating-cancer-care/cancernet-feature-articles/
importance-hydration.

Lipton B. Why You Should Start Your Day with Lemon Water, Health Magazine, Feb 24, 2015.

Lustig RH, et al., Public health: the toxic truth about sugar. Nature, 2012; 282: 27-29

Mantovani A, et al., Cancer-related inflammation. Nature, 2008; 454(7203):436-444.

Moyer MW. It’s Time to End the War on Salt, Scientific American, July 8, 2011

Paul M, et al., Healthy Eating, HelpGuide.org, HelpGuide, Accedssed Feb. 2014. http://www.helpguide.org/life/healthy_eating_diet.htm.

Nuts and Your Heart: Eating Nuts for Heart Health, Mayo Clinic, MayoClinic.org, 19 Feb. 2014. http://www.mayoclinic.org/diseases-conditions/heart-disease/in-depth/nuts/art-20046635?pg=1.

Nuts for the Heart, The Nutrition Source, Harvard School of Public Health, http://www.hsph.harvard.edu/nutritionsource/nuts-for-the-heart/.

Salt and your health, Part I: the sodium connection, Harvard Men’s Health Watch, October 2010

The problem with potatoes, The Nutrition Source, Harvard School of Public Health, January 24, 2014, http://www.hsph.harvard.edu/nutritionsource/2014/01/24/the-problem-with-potatoes/

Wu S, et al., Vitamin D, Vitamin D receptor, and macroautophagy in inflammation and infection. Discov Med, 2011 Apr;11(59):325-35. PMID: 21524386

Physical Activity

American Cancer Society Guidelines on Nutrition and Physical Activity for Cancer Prevention, cancer.org, last medical review 1/11/2012, last revised 4/9/2015

American Heart Association Recommendations for Physical Activity in Adults, last reviewed 02/2014, http://www.heart.org/HEARTORG/HealthyLiving/PhysicalActivity/FitnessBasics/American-Heart-Association-Recommendations-for-Physical-Activity-Infographic_UCM_450754_SubHomePage.jsp

Bickel CS, et al., Exercise dosing to retain resistance training adaptations in young and older adults, Medicine & Science in Sports & Exercise, 2011; 43(7):1177-87.

Cohen J. 10 Chores That Burn 100 Calories, Fox News Magazine, Fox News, 24 Apr. 2013. http://magazine.foxnews.com/food-wellness/10-chores-burn-100-calories.

Corliss, J. Too much sitting linked to heart disease, diabetes, premature death. Harvard Health Blog, Jan 22, 2015: http://www.health.harvard.edu/blog/much-sitting-linked-heart-disease-diabetes-premature-death-201501227618

How much physical activity do children need?, Centers for Disease Control and Prevention, last reviewed June 4, 2015, www.cdc.gov/physicalactivity/basics/children/

Klein S. Spring Cleaning: How Many Calories Do You Burn Doing Chores? The Huffington Post. TheHuffingtonPost.com, 24 Mar. 2013. http://www.huffingtonpost.com/2013/03/24/spring-cleaning-calories-burned_n_2934204.html.

Physical Activity and Cancer, National Cancer Institute at the National Institute of Health, 22 July 2009. www.cancer.gov/cancertopics/factsheet/prevention/physicalactivity.

Recommendations for Cancer Prevention, AICR Reduce Your Risk, American Institute for Cancer Research (AICR), 30 July 2011. http://www.aicr.org/reduce-your-cancer-risk/recommendations-for-cancer-prevention/recommendations_02_activity.html.

Reduce Your Cancer Risk: Physical Activity, AICR Reduce Your Risk. American Institute for Cancer Research (AICR), 30 July 2011. http://www.aicr.org/reduce-your-cancer-risk/recommendations-for-cancer-prevention/recommendations_02_activity.html.

Rock CL, et al., Nutrition and physical activity guidelines for cancer survivors. CA: A Cancer Journal for Clinicians, 2012; 62(4): 242–274. doi: 10.3322/caac.21142

Weight and Obesity, Physical Activity, Diet, Energy Balance. National Cancer Institute at the National Institute of Health, 2012. http://www.cancer.gov/cancertopics/prevention/energybalance.

Emotional Health

AARP National Poll Highlights Personal Challenges of Caregivers in the United States, AARP: Real Possibilities. AARP, 7 Nov. 2013. http://www.multivu.com/mnr/63968-ad-council-aarp-caregiver-assistance.

Anxiety, Anxiety and Depression Association of America, ADAA. http://www.adaa.org/understanding-anxiety/generalized-anxiety-disorder-gad.

Benson H, et al., Stress Management: Approaches for Preventing and Reducing Stress, Rep. Harvard Health Publications, 2013. http://www.health.harvard.edu/special_health_reports/stress-management-approaches-for-preventing-and-reducing-stress.

Bourdeau T, et al., Coping with a Diagnosis of Chronic Illness, American Psychological Asso­ciation. APA, Aug. 2013. http://www.apa.org/helpcenter/chronic-illness.aspx.

Caldwell, E. The Stress and Cancer Link: ‘Master-Switch’ Stress Gene Enables Cancer’s Spread. Research and Innovation Communications. Ohio State University, 22 Aug. 2013. http://researchnews.osu.edu/archive/ATF3.htm.

Caring for the Caregiver, National Cancer Institute. National Cancer Institute at the National Institute of Health, 29 June 2007. 28 Apr. 2014. http://www.cancer.gov/cancertopics/coping/caring-for-the-caregiver.

Coping With Chronic Illnesses and Depression, WebMD Medical Reference. Ed. Joseph Goldberg. WebMD, LLC., 8 Feb. 2014. http://www.webmd.com/depression/guide/chronic-illnesses-depression?page=2.

Depression, Anxiety and Depression Association of America, ADAA. http://www.adaa.org/understanding-anxiety/depression.

Duckworth K. Depression and Chronic Illness: Fact Sheet. N.p.: Ken Duckworth, n.d. The National Alliance on Mental Illness. www.nami.org, Oct. 2009.

An Estimated 1 in 10 U.S. Adults Report Depression, Centers for Disease Control and Prevention. CDC.org, 31 Mar. 2011. http://www.cdc.gov/features/dsdepression/.

Enayati A. Fighting Loneliness and Disease with Meditation, CNN Health. Cable News Network, 25 Aug. 2012. 28 Apr. 2014. http://www.cnn.com/2012/08/25/health/meditation-loneliness-inflammation-enayati/index.html.

Enayati A. Stress, Depression May Affect Cancer Survival, CNN Health. Cable News Network, 14 Jan. 2012. http://www.cnn.com/2012/09/14/health/stress-cancer-survival-enayati.

Lammens CM, et al., Distress in partners of individuals diagnosed with or at high risk of developing tumors due to rare hereditary cancer syndromes, Psycho-Oncology 20, no. 6 (2011): 631-638.

Lammens CM, et al., Psychosocial impact of von Hippel–Lindau disease: levels and sources of distress, Clinical Genetics 77, no. 5 (2010): 483-491.

Paddock C. Stress Fuels Cancer Spread by Triggering Master Gene, Medical News Today. MediLexicon International, 27 Aug. 2013. http://www.medicalnewstoday.com/articles/265254.php.

Peterson S. Communicating with Your Children regarding Risk for Adult Onset Disorders, 32nd Annual Education Conference California, Anaheim, 11 Oct. 2013. Lecture.

Psychological Stress and Cancer, Fact Sheets: Risk Factors and Possible Causes, National Cancer Institute, 10 Dec. 2012.

Rowland E, et al., Communicating inherited genetic risk between parent and child: a meta-thematic synthesis. International Journal of Nursing Studies, 2013; 50(6): 870-880.

Support for Caregivers, For Caregivers, Family, and Friends. National Cancer Institute,  1 Aug. 2013. http://www.cancer.gov/cancertopics/pdq/supportivecare/caregivers/patient/.

Thornton S. von Hippel Lindau Syndrome, The Children’s Hospital of Philadelphia, 2012 http://www.chop.edu/conditions-diseases/von-hippel-lindau-syndrome#.VEZ9B8tATcs.

Stress Management, Mayo Clinic. Mayo Foundation for Medical Education and Research, 8 Apr. 2014. http://www.mayoclinic.org/healthy-living/stress-management/basics/stress-basics/hlv-20049495.

Understanding Genetics: A New England Guide for Patients and Health Professionals, New England Public Health Genetics Education Collaborative, 2010.

Discussing VHL with Your Family

Age of majority, Wikipedia, accessed 7/30/2015, https://en.wikipedia.org/wiki/Age_of_majority

Being a Teen with a Genetic Condition Fact Sheet. Shire. BraveCommunity.org, 2013. http://www.bravecommunity.com/.

Create a Personal Stress Management Guide, Building Resilience – A Teen’s Plan, American Academy of Pediatrics, n.d. 21, Accessed Oct. 2014.  https://www.healthychildren.org/English/healthy-living/emotional-wellness/Building-Resilience/Pages/For-Teens-Creating-Your-Personal-Stress-Management-Plan.aspx.

Feinstein S. Will you be able to help your college-age child in a medical emergency? Consumer Reports, July 22, 2015

Gibson R, et al., Envisioning My Future: A Young Person’s Guide to Health Care Transition, Children’s Medical Services. Health Care Transition Initiative of the Institute for Child Health Policy, University of Florida, 2005

Rowland, E. and Metcalfe, A. “Communicating Inherited Genetic Risk Between Parent And Child: A Meta-Thematic Synthesis”. International Journal of Nursing Studies 50.6 (2012): 870-880. Web.

Reiss J. Now that you’re in High School, Children’s Medical Services. Health Care Transition Initiative of the Institute for Child Health Policy, University of Florida, 2008

Reiss J. When You’re 18, You Are In Charge of Your Health, Children’s Medical Services. Health Care Transition Initiative of the Institute for Child Health Policy, University of Florida, 2009.

Roberson K. Being a healthy adult: How to advocate for your health and health care. New Brunswick, NJ: The Elizabeth M Boggs Center on Developmental Disabilities, 2010.

Rowland, e, et al, Communicating inherited genetic risk between parent and child: a meta-thematic synthesis, Int J Nurs Stud 2013 Jun; 50(6):870-80

Students Living with a Genetic Condition: A Guide for Parents, Genetic Alliance. 2013. http://www.geneticalliance.org/sites/default/files/publicationsarchive/attending_with_genetic.pdf.

Transition for Children, Genes in Life. Genesinlife.org, 2014. http://genesinlife.org/after-diagnosis/plan-future/transition-children.

Transition Health Care Checklist: Preparing for Life as an Adult, Wisconsin Community of Practice on Transition, Madison, WI: Waisman Center, University of Wisconsin-Madison, 2009

VHL Research

Frew IK, et al., Multitasking by pVHL in tumour suppression, Curr Opin Cell Biol, 2007 Dec:19(6):685-90, PMID: 18006292

Kaelin WG Jr. The von Hippel-Lindau tumor suppressor gene and kidney cancer, Clin Cancer Res, 2004 Sep 15;10(18 Pt 2):6290S-5S. PMID: 15448019

Kaelin WG Jr. Role of VHL gene mutation in human cancer, J Clin Oncol, 2004 Dec 15;22(24):4991-5004., PMID: 15611513

Kaelin WG Jr. von Hippel-Lindau disease. Annu Rev Pathol, 2007;2:145-73. PMID: 18039096

Kaelin WG Jr. Treatment of kidney cancer: insights provided by the VHL tumor-suppressor protein, Cancer, 2009 May 15;115(10 Suppl):2262-72, PMID: 19402056

Latif F, et al., Identification of the von Hippel-Lindau Disease Tumor Suppressor Gene. Science, 1993 260:1317-1320. PMID: 8493574

Li L, et al., New insights into the biology of renal cell carcinoma, Hematol Oncol Clin North Am, 2011 Aug; 25(4):667-86. PMID: 21763962

Linehan WM, et al., Molecular diagnosis and therapy of kidney cancer, Annu Rev Med, 2010; 61:329-43. PMID 20059341; Nat Rev Urol, 2010 May;7(5):277-85. PMID: 20059341

Linehan WM, et al., The genetic basis of kidney cancer: a metabolic disease. Nat Rev Urol, 2010 May;7(5):277-85., PMID: 20448661

Nordstrong-O’Brien M, et al., Genetic analysis of von Hippel-Lindau disease. Hum Mutat, 2010, May;31(50):521-37. PMID: 20151405

Shen C, Kaelin WG, et al., Genetic and Functional Studies Implicate HIF 1a as a 14q Kidney Cancer Suppressor Gene, Cancer Discov, 2011 Aug;1(3):222-235., PMID: 22037472

Tsuchiva MI, Shuin T, et al., Renal cell carcinoma- and pheochromocytoma-specific altered gene expression profiles in VHL mutant clones, Oncol Rep, 2005 Jun;13(6):1033-41., PMID: 15870918.