email page print pageAll Topic Reviews
"Are You There Alone?""How Come Boys Get to Keep Their Noses?""My Madness Saved Me"10% Happier365 Days49 Up56 UpA Beautiful MindA Beautiful MindA Beautiful MindA Book of ReasonsA Can of MadnessA Child's Life and Other StoriesA Dangerous LiaisonA Fight to BeA First-Rate MadnessA Good Enough DaughterA Heartbreaking Work of Staggering GeniusA Lethal InheritanceA Lethal InheritanceA Life ShakenA Life Worth LivingA Little PregnantA Message from JakieA Million Little PiecesA Numerate LifeA Pocket History of Sex in the Twentieth CenturyA Slant of SunA Special EducationA Tribe ApartAbout FaceAddicted Like MeADHD & MeAEIOUAgainst Medical AdviceAgents in My BrainAileen - Life and Death of a Serial KillerAlgernon, Charlie and IAll Out!All Seasons PassAlphavilleAlways Too Much And Never EnoughAlzheimer'sAn Anthropologist on MarsAn EducationAn Unquiet MindAngela's AshesAngelheadAnna Freud: A BiographyAnnie's GhostsAnother Bullshit Night in Suck CityAnthology of a Crazy LadyApples and OrangesApproaching NeverlandAre You There, Vodka? It's Me, ChelseaAs I Live and BreatheAs Nature Made HimAt Home in the Heart of AppalachiaAt the End of WordsAvalancheBad BoyBad GirlBeautiful BoyBeautiful WreckBecoming AnnaBecoming MyselfBen Behind His VoicesBequest and BetrayalBereftBertrand RussellBlackoutBlanketsBloodlettingBodies in Motion and at RestBoneBorn on a Blue DayBoyBoy AloneBoyleBrain on FireBreaking ApartBreaking the SilenceBrokenBulimics on BulimiaBuzzCamus and SartreCharles DarwinChasing the HighCheeverCherryCity of OneCluesClumsyComfortComplications Compulsive ActsConfessions of a Cereal EaterConfessions of a Former ChildConfessions of a Grieving ChristianConfessions of the Other MotherConfidingConquering the Beast WithinContesting ChildhoodCrackedCrazyCry Depression, Celebrate RecoveryDamned to EternityDancing at the Shame PromDante's CureDaughter of the Queen of ShebaDavid Sedaris Live at Carnegie HallDays With My FatherDefeating the VoicesDementia Caregivers Share Their StoriesDepression and NarrativeDescartesDetourDevil in the DetailsDiagnosis: SchizophreniaDirty DetailsDirty SecretDivided MindsDivine MadnessDon't Get Too ComfortableDown Came the RainDress Your Family in Corduroy and DenimDrinkingDriving My FatherDrunkardDryEarly Embraces IIIEarly ExposuresEinsteinEinstein and OppenheimerElectroboyElegy for IrisElijah's CupElliott Smith and the Big NothingElsewhereEnough About YouEpilepticEvery Girl Tells a StoryEverything In Its PlaceExamined LivesExiting NirvanaFaces of Huntington'sFamily BoundFast GirlFearless ConfessionsFind MeFinding Iris ChangFirst Person Accounts of Mental Illness and RecoveryFirst Person PluralFixing My GazeFlanneryFolie a DeuxFor the Love of ItFortress of My YouthFrank Ramsey (1903-1930)Franz KafkaFraudFree RefillsFreudFreudFreudFriedrich NietzscheFrom Joy Division to New OrderFumblingFun HomeFuriously HappyGalileo Get Me Out of HereGirl in Need of a TourniquetGirl Walking BackwardsGirl, InterruptedGirl, InterruptedGirls on the VergeGoing BlindGoing Through Hell Without Help From AboveGraysonGrowing Up JungGuttedHalf a Brain Is EnoughHardcore from the HeartHead CasesHeal & ForgiveHeal & Forgive IIHeavier than HeavenHeinz KohutHeinz KohutHello from Heaven!Hello to All ThatHer HusbandHer Last DeathHigh PriceHole in My LifeHolidays On IceHolidays on IceHope's BoyHouse of Happy EndingsHouse of Happy EndingsHow I Stayed Alive When My Brain Was Trying to Kill MeHow to Lose Friends & Alienate PeopleHow to Make Love Like a Porn Starhow to stop timeHumeHunger Makes Me a Modern GirlHurry Down SunshineI Am I Am I AmI Feel Bad About My NeckI Never Promised You a Rose GardenI Remain in DarknessI'd Rather Eat ChocolateI'd Rather LaughIf I Die Before I WakeImagining RobertIn Search of FatimaIn the Realms of the UnrealIn the Wake of SuicideInside TherapyInternInvisible No MoreIt Happened to NancyIt Takes a Worried ManJack Cole and Plastic ManJean-Paul SartreJohn Stuart MillJourneys with the Black DogJust CheckingKafkaKantLa SierraLab GirlLast Flight OutLearning to FallLet Me Make It GoodLife As We Know ItLife InterruptedLife ReimaginedLimboLincoln's MelancholyListening in the Silence, Seeing in the DarkLittle PeopleLive For Your Listening PleasureLive Through ThisLiving in the Shadow of the Freud FamilyLiving With SchizophreniaLiving with SchizophreniaLockeLonelyLong ShotLook Me in the EyeLooking for The StrangerLoose GirlLosing Mum and PupLosing My MindLove Is a Mix TapeLove SickLove Times ThreeLove Works Like ThisLove You, Mean ItLuckyLudwig WittgensteinLyingMad HouseMad PrideMadame ProustMadnessMagical ThinkingMalignant SadnessManicMarcel ProustMarcus AureliusMary BarnesMaverick MindMe Talk Pretty One DayMeaningMelanie KleinMemoirMemoirs of an Addicted BrainMemoirs of My Nervous IllnessMen-ipulationMisconceptionsMiss American PieMockingbird YearsMomma and the Meaning of LifeMommies Who DrinkMonkey MindMore, Now, AgainMortificationMy Age of AnxietyMy Body PoliticMy Brain Tumour AdventuresMy DepressionMy Father's HeartMy First Cousin Once RemovedMy Flesh and BloodMy Horizontal LifeMy Life Among the Serial KillersMy Sister LifeMy Stroke of InsightName All the AnimalsNeural MisfireNietzscheNietzsche: The Man and His PhilosophyNinety DaysNo Hurry to Get HomeNo Impact ManNo More ShavesNo One Cares About Crazy PeopleNolaNotebooks 1951-1959NothingOdd Girl Speaks OutOedipus WreckedOf Spirits & MadnessOn Being RapedOn the Edge of DarknessOn the MoveOne Hour in ParisOne Hundred DaysOphelia SpeaksPagan TimePassing for NormalPeople Who Eat DarknessPerfect ChaosPerfect ExamplePermanent Present TensePersepolisPlanet of the BlindPlaying with FirePlease Don't Kill the FreshmanPoisoned LovePollockPOPismPortraits of Huntington'sPoster ChildProzac DiaryPsychiatrist on the RoadPsychosis in the FamilyPuppy Chow Is Better Than ProzacQuitting the Nairobi TrioRaising BlazeReasons to Stay AliveRebuiltRecovered, Not CuredRelative StrangerRescuing JeffreyRestricted AccessRevengeRewind, Replay, RepeatRichard RortyRiding the Bus With My SisterRobert Lowell, Setting the River on FireRoom For JRosemaryRough MagicRunning After AntelopeRunning with ScissorsScattershotSchizophreniaSchopenhauerSecond OpinionsSectionedSeeing EzraSeeing the CrabSet the Boy FreeSex & Single GirlsSex ObjectShakespeareShe Bets Her LifeShe Got Up Off the CouchShut the DoorSickenedSilencing the VoicesSimone de BeauvoirSinging in the FireSkin GameSlackjawSlut!SmashedSome Assembly RequiredSome Kind of GeniusSometimes Amazing Things HappenSometimes Madness Is WisdomSongs from the Black ChairSongs of the Gorilla NationSoren KierkegaardSpeak to MeSpeaking Our Minds: Revised EditionSpecial SiblingsSpentStandbyStick FigureStill LivesStretchSunset StorySurviving OpheliaSwing LowTales from Both Sides of the BrainTales of PsychotherapyTalk to HerTell Me Everything You Don't RememberTellingTelling Tales About DementiaThe Accidental BillionairesThe AddictThe Anatomy of HopeThe Anti-Romantic ChildThe Art of MisdiagnosisThe Bastard on the Couch CDThe BeastThe Bell JarThe Best Seat in the HouseThe Big FixThe Body SilentThe Boy on the Green BicycleThe Boy Who Loved Too MuchThe Boy Who Loved WindowsThe Bright HourThe Buddha & The BorderlineThe Burn JournalsThe Camera My Mother Gave MeThe Cancer Monologue ProjectThe Center Cannot HoldThe Chelsea WhistleThe Churkendoose AnthologyThe Day the Voices StoppedThe Devil WithinThe DisappearanceThe Discomfort ZoneThe Doctor Is InThe Eden ExpressThe Family SilverThe Farm Colonies: Caring for New York City's Mentally Ill In Long Island's State HospitalsThe Fasting GirlThe First Man-Made ManThe First TimeThe Geography of BlissThe Glass CastleThe Good DoctorsThe Hillside Diary and Other WritingsThe Incantations of Daniel JohnstonThe Infidel and the ProfessorThe Last AsylumThe Last Good FreudianThe Last Time I Wore a DressThe Liars' ClubThe Lives and Loves of Daisy and Violet HiltonThe Lives They Left BehindThe LobotomistThe Long GoodbyeThe Looked After Kid: Memoirs from a Children's HomeThe Loony-Bin TripThe Madness of Our LivesThe Making of a PhilosopherThe Making of Friedrich NietzscheThe Man Who Couldn't EatThe Man Who Shocked the WorldThe Man Who Tasted ShapesThe Marvelous Hairy GirlsThe Maximum Security Book ClubThe Me in the MirrorThe Memory PalaceThe Mercy PapersThe Mistress's DaughterThe Mother of Black HollywoodThe Naked Bird WatcherThe Naked Lady Who Stood on Her HeadThe Night of the GunThe Noonday DemonThe Notebook GirlsThe NursesThe Only Girl in the CarThe Orchid ThiefThe Other HollywoodThe OutsiderThe Philosopher's Autobiography The Philosophical Breakfast ClubThe Philosophical IThe Pits and the PendulumThe Pornographer's GriefThe Private Memoirs and Confessions of a Justified Sinner The Professor and the MadmanThe Psychopath TestThe Quiet RoomThe Red DevilThe Rescue of Belle and SundanceThe Ride TogetherThe Rules of the TunnelThe Secret of LifeThe Shaking Woman or A History of My NervesThe Shared HeartThe Shiniest JewelThe Siren's DanceThe Statistical Life of MeThe Story of My FatherThe Strange Case of Hellish NellThe Summer of a DormouseThe SurrenderThe Talking CureThe Thought that CountsThe Three of UsThe Undoing ProjectThe Vagina MonologuesThe Velveteen FatherThe Winter of Our DisconnectThe Woman Who Walked into the SeaThe Years of Silence are PastThe Yellow HouseThe Yipping TigerThick As ThievesThinThis Close to HappyThomas S. SzaszTiger, TigerTits, Ass, and Real EstateTo Redeem One Person Is to Redeem the WorldTo Walk on EggshellsTransforming MadnessTrue CompassTruth & BeautyTruth Comes in BlowsTuesdays with MorrieTweakTwitch and ShoutUltimate JudgementUndercurrentsUnholy GhostUnlikelyVoices of AlcoholismVoices Of Alzheimer'sVoices of CaregivingVoices of RecoveryVoluntary MadnessWaiting for DaisyWar FareWashing My Life AwayWastedWaveWe're Going to Need More WineWe're Not MonstersWeather Reports from the Autism FrontWeekends at BellevueWhat Did I Do Last Night?What Goes UpWhat I Learned in Medical SchoolWhat's Normal?When a Crocodile Eats the SunWhen Breath Becomes AirWhen Do I Get My Shoelaces Back?.....When It Gets DarkWhen the Piano StopsWhen You Are Engulfed in FlamesWhere Did It All Go Right?Where is the Mango Princess?Where the Roots Reach for WaterWhile the City SleptWhile They SleptWho Was Jacques Derrida?Why I Left, Why I StayedWhy I'm Like ThisWildWill's ChoiceWinnicottWinnieWish I Could Be ThereWith Their EyesWomen Living with Self-InjuryWomen, Body, IllnessWrestling with the AngelYou Must Be DreamingYour Voice in My HeadZeldaZor
Huntington's Disease (HD) is a relatively rare genetic
disorder: maybe as many as 40,000 Americans have this severe progressive
neurological disorder. But it is
notable for several reasons. First, it
is a particularly awful disease: the average onset age is 36, and it generally
takes 20 years until the person with the disease dies. It affects the person both physically and
mentally. Second, it is passed on from
a parent to a child with 50% probability.
Normally, if one's parent has HD, then one has a one-in-two chance of
also having HD. People who knew that
the disease was in their family often used to have to live in fear that they
would also start developing symptoms.
There is currently no cure and treatments have limited success in
reducing the symptoms. In 1994, a
genetic test became available that could tell people with a great deal accuracy
whether they had inherited the genetic abnormality. Now, people who know they are at some risk for the disease have
to decide whether they want to know if they carry the genes for the disease,
and this itself is a extremely difficult decision for many. There's also a troubling question whether it
is right for people with the genes for HD to have children knowing that their
children would have a 50% of inheriting those genes. Third, HD presents many hard choices for family members caring
for their relatives with the disease, since people with HD need a great deal of
attention, and in early stages can lose their inhibitions and so behave in
socially unacceptable ways. There's no
doubt that living with a family member who has HD can emotionally draining and
upsetting. So the issues faced by
people with HD (pHDs!) are often quite similar to those faced by people with
other neurological disorders and severe mental illnesses. As we come to understand the genetic basis
of many of these diseases, families at risk for them will face other issues
currently faced by families at risk for HD.
Faces of Huntington's is a collection of short
reflections and some poems by people with families at risk for HD or who care
for people with the disease. These
pieces are divided into different groups, such as "faces of
encouragement," "faces of love," "faces of family,"
"faces of heroes," "faces of faith," "faces of
forgiveness," and "faces of hope." One admirable feature of this collection is that it does not
simply represent HD as a tragedy or an affliction, even though the contributors
are all very clear about the pain that HD can cause. The authors write from their own personal experience, telling
their stories, recounting what happened to them, how they coped, and what they
learned. The stories particularly focus
on how their experience relates to their religious faith, and they all write
from a Christian perspective, which is not surprising since the Canadian publisher,
Essence, is "dedicated to furthering the work of Christ through the
written word." So the book may be
of limited interest to non-Christian readers.
It should also be noted that most of the contributors are not
professional authors, and their writing has a somewhat homespun feel to it. At over 350 pages, some readers may find it
hard to read the book from beginning to end, and could find it more rewarding
to dip into the book at different points.
Nevertheless, people's personal narratives can
convey a sense of their lived experience that is not captured by lists of
symptoms or statistics about people with HD and their families. Faces
of Huntington's will be a valuable resource to people with HD in their
family. But it will also be valuable to
health care professionals who interact with these families and to medical
ethicists and policy-makers who would benefit from a more complete picture of
what it is like to live with HD in one's family.
© 2002 Christian Perring. All
Perring, Ph.D., is Chair of the Philosophy Department at Dowling College,
Long Island. He is editor of Metapsychology Online Review. His main
research is on philosophical issues in psychiatry. He is especially interested
in exploring how philosophers can play a greater role in public life, and he is
keen to help foster communication between philosophers, mental health
professionals, and the general public.
Huntington's Disease Society of America
Genes Your Health pages on HD
Piece by Carmen Leal-Pock
reprinted from Faces of Huntington's.
Review of Early
Warning: Cases and Ethical Guidance for Presymptomatic Testing in Genetic
Welcome to MHN's unique book review site Metapsychology.
We feature over 8000 in-depth reviews of a wide range of books and DVDs written by our reviewers from many backgrounds and
We update our front page weekly and add more than thirty new reviews each month. Our editor is Christian Perring, PhD. To contact him, use one of the forms available here.
Can't remember our URL? Access our reviews directly via 'metapsychology.net'
Metapsychology Online reviewers normally receive gratis review copies of the items they review.
Metapsychology Online receives a commission from Amazon.com for purchases through this site, which helps us send
review copies to reviewers. Please support us by making your Amazon.com purchases through our Amazon links. We thank
you for your support!
Join our e-mail list!: Metapsychology New Review Announcements: Sent out monthly, these
announcements list our recent reviews. To subscribe, click
Interested in becoming a book reviewer for Metapsychology? Currently, we especially need thoughtful reviewers
for books in fiction, self-help and popular psychology. To apply, write to our editor.
Metapsychology Online Reviews
Promote your Page too
Metapsychology Online Reviews