At Risk for Huntington's Disease

My name is Gene Veritas, which is a pseudonym I use to write about Huntington's disease on this weblog. I tested positive for HD in 1999, and my mother died of the disease in 2006. My passion in life is to stop HD and other neurological diseases from devastating individuals and their families. Your comments are welcome. You can post them at the end of the blog entries, or you can e-mail me by clicking here.


The incredible lightness – and responsibility – of exiting the HD closet
Saturday, December 8, 2012
Lots of people are in my corner.
Comments (1) | Tags: HD closet, advocacy, advocate, Huntington's, wife, daughter, mother, symptoms, neurological, health, University of San Diego, testing, tested positive, Parkinson's, Lewy body disease, at-risk, awareness, leader, hope, Brazil, Isis, genetic, stigma, research, brain, gene-positive

Kate's untested baby (HD and abortion – Part II)
Sunday, December 18, 2011
A young woman prepares for the worst and prays for the best.
Comments (0) | Tags: Huntington's, abortion, juvenile Huntington's, juvenile HD, gene-positive, son, daughter, mother, father, blog, love, wife, tested positive, tested negative, HD-free, suicide, mercy killing, assisted suicide, nursing home, symptoms, untested, at-risk, testing, genetic testing, geneticist, negative, gene, chorea, test, CAG repeats, grandfather, huntingtin, memory, caregiving, wheelchair, Medicare, Medicaid, disabled, sterilize, sterilization, technology, awareness, cure, treatments, Catholic, stress, struggle

HD in the media – Part II: A suicide on TV
Monday, November 7, 2011
Watching Private Practice left me feeling painfully mortal.
Comments (1) | Tags: Huntington's, suicide, assisted suicide, symptoms, doctor, at-risk, gene-positive, genetic, genetic testing, mother, son, father, daughter, wife, genetic test, disabled, testing positive, HD-negative, nursing home, onset, CHDI, diagnosis, CAG repeats, chorea, support group, research, treatment, cure, denial

HD and the media – Part I: stigma and genetic testing
Monday, October 31, 2011
Testing is no longer just a personal matter.
Comments (3) | Tags: Huntington's, Katie Moser, at risk, at-risk, mother, daughter, gene, stigma, denial, HDSA Person of the Year, PGD, advocate, Center of Excellence, genetic testing, genetic, genetic counseling, gene-positive, HD-positive, get tested, geneticist, wife, tested negative, support group, clinical trials, treatment, cure, Martha Nance, brain, neurological

Making sense of HD organizations, and a call for unity
Monday, October 3, 2011
We need informed dialogue.
Comments (0) | Tags: CHDI, Hereditary Disease Foundation, Huntington's Disease Drug Works, Huntington's, brain, treatment, cure, HD-positive, clinical trial, observational trial, Guthrie, Congress, gene, genetic, genetic testing, care, clinic, advocacy, support group, research, genetic counseling, caregiver, nursing home, Nancy Wexler, Alice Wexler, at-risk, Venezuela, genetic test, genetic, drug, LaVonne Goodman, HDSA Person of the Year, pharmaceutical, scientist, Isis Pharmaceuticals

One Man's Story: Entering the Light
Friday, September 2, 2011
Your personal testimony is the best way to fight HD's stigma.
Comments (0) | Tags: stigma, brain, fatal, Huntington's, mother, diagnosis, tested, gene-positive, discrimination, at-risk, testing, closet, tested positive, genetic, geneticist, pre-existing condition, treatment, cure, clinical trial, researcher, advocate, genetic testing, trial, awareness

No time for complacency: get ready for HD clinical trials
Thursday, July 28, 2011
We must all chip in to help find treatments.
Comments (0) | Tags: Huntington's, scientist, gene, Charles Sabine, clinical trial, gene-positive, symptoms, symptomatic, at-risk, CHDI, trial, untested, denial, sister, daughter, activism, activist, love, researcher, FDA, drug, motor, cognitive, psychiatric, brain, cocktail, Xenazine, tetrabenazine, Lundbeck, Alnylam, RNA interference, asymptomatic, presymptomatic, mother, Enroll-HD

The Huntington's community rising and converging
Wednesday, May 11, 2011
It's time to conquer HD!
Comments (0) | Tags: Huntington's, Hereditary Disease Foundation, Huntington's Disease Drug Works, CHDI, cure, symptoms, mother, daughter, wife, father, solidarity, diagnosis, gene-positive, HD Buzz, HDDW, LaVonne Goodman, genetic, brain, stem cell, Jan Nolta, California, Alzheimer's, Parkinson's, Lou Gehrig's, mesenchymal stem cell, neuron, RNA, Isis, Alnylam, Institute for Regenerative Cures, Lundbeck, Xenazine, tetrabenazine, FDA, chorea, PGD, at-risk, tested negative, psychiatric, behavioral, depression, psychotic, caregiver, caregiving, medication, cope, huntingtin, gene, protein, huntingtin suppression, advocacy, activism

The shadow career
Monday, April 18, 2011
I'm going the extra mile for the cause.
Comments (5) | Tags: mother, Huntington's, diagnosis, testing positive, cure, treatment, daughter, insurance, wife, tested negative, genetic test, psychotherapist, activism, activist, discrimination, genetic, caregiver, CHDI, CHDI Foundation, Alnylam, NINDS, symptoms, at-risk

The faceless faces of Huntington's disease
Saturday, April 2, 2011
It's time to remove our masks.
Comments (722) | Tags: Huntington's, orphan disease, genetic defect, genetic, brain, death, stigma, ignorance, discrimination, denial, fear, faceless, neurological, cure, treatments, symptoms, advocacy, awareness, neurologist, diagnosis, closet, gene-positive, at-risk, at risk, CHDI

Huntington's disease, loneliness, and love
Wednesday, March 23, 2011
Standing by HD people is the right thing to do.
Comments (4) | Tags: love, genetic, Huntington's, father, mother, daughter, juvenile Huntington's, symptoms, at-risk, at risk, gene-positive, wife, tested negative, tested positive, diagnosis, warrior, nursing home, Terry Leach, support group, caregiving, caregiving

Huntington’s support group: seeking solidarity, fighting denial
Thursday, March 3, 2011
I connected with my 'HD family.'
Comments (0) | Tags: Huntington's, denial, support group, symptoms, gene-positive, mother, diagnosis, wife, daughter, father, death, caregiver, caregiving, at-risk, tested negative, closet, CHDI Foundation, CHDI, gene, nursing home, warrior, sister, tested, testing, research, trials, genetic, scientists, drug, activist, hope

Feeling like an alien: going public about Huntington's
Monday, January 31, 2011
My speech will be posted to the web.
Comments (3) | Tags: disabled, brain, Huntington's, stigma, mother, diagnosis, discrimination, tested positive, closet, activist, pre-existing condition, gene-positive, Vertex, CHDI, genetic, coming out, at-risk, support group, going public

The best Christmas gift of all
Friday, December 24, 2010
I remained symptom-free in 2010.
Comments (0) | Tags: Huntington's, clinic, tested positive, mother, symptoms, depression, mood, chorea, Center of Excellence, cognitive, test, testing, gene-positive, death, Huntington's Disease Drug Works, trehalose, coenzyme Q-10, omega-3, blueberry, creatine, Brazil, anxiety, faith, spirituality, psychotherapy, hope, at-risk, diagnosis, genetic, genetic testing

Globalizing the fight against Huntington's
Friday, December 3, 2010
'Enroll-HD' aims to speed up research.
Comments (0) | Tags: Huntington's, mother, at-risk, Enroll-HD, CHDI, gene-positive, HD-positive, Brazil, Associação Brasil Huntington, Nancy Wexler, Alice Wexler, Latin America, Venezuela, Maracaibo, clinical trial, cure, treatment, guinea pig, neurological, genetic, gene

Enjoying the life we have left
Friday, November 5, 2010
At-risk and HD-positive people need and deserve a break.
Comments (3) | Tags: Huntington's, at-risk, tested, asymptomatic, symptoms, HD-positive, gene-positive, HSG, Martha Nance, Leslie Thompson, HDSA-San Diego, HDSA, Vertex, exercise, mother, daughter, father, Charles Sabine, sleep, stem-cell, stem cell, CHDI, scientist

'More to lose than ever'
Saturday, September 18, 2010
Living gene-positive for HD has made me a better person.
Comments (0) | Tags: gene-positive, Huntington's, symptoms, mother, father, daughter, denial, at-risk, warrior, Brazil, HDSA, research, fundraising, support, death, faith, love

Charting new territory: going public about HD
Monday, June 14, 2010
I'll learn as I go.
Comments (0) | Tags: gene-positive, Huntington's, disease, diagnosis, mother, wife, daughter, at-risk, Brazil, God, going public, closet, going public, MRI, Isis Pharmaceuticals, oligonucleotide, Associação Brasil Huntington, Teilhard, coming out, discrimination

'Dad, could you get HD?'
Wednesday, May 26, 2010
I revealed my gene-positive status to my daughter.
Comments (0) | Tags: daughter, gene-positive, Huntington's, disease, Terry Leach, juvenile Huntington's, tested, test, mother, wife, HDSA-San Diego, Shoot to Cure HD, Chargers, Huntington's Disease Drug Works, came out, testing, at-risk, come out, creatine, supplement, truth, symptoms

A perfect day: the sunset of a meaningful life
Thursday, May 20, 2010
Even while facing HD, Steve and Gayle enjoyed every minute together.
Comments (1) | Tags: Huntington's, disease, death, gene-positive, premanifest, brain, caregiver, love, juvenile Huntington's, mother, father, son, daughter, warrior, feeding tube, San Diego, Chargers, wife, support, support group, HDSA-San Diego, HDDW, LaVonne Goodman, at-risk, exercise, symptoms, death

The point of no return
Saturday, April 17, 2010
How do you leave the closet about a disease that will deeply alter people's perceptions of your abilities?
Comments (2) | Tags: Huntington's disease, gene-positive, closet, mother, symptoms, discrimination, daughter, wife, Yale, test, coming out, Giamatti, cure, activism, tested negative, testing, genetic testing, genetic, HDSA-San Diego, advocacy, psychotherapist, freedom, Edgemoor, wheelchair, at-risk, at risk, Race Across America, H.R. 678

Good-bye, pre-existing conditions!
Friday, March 26, 2010
The new health care law will finally guarantee us coverage and care.
Comments (3) | Tags: pre-existing condition, Huntington's, HDSA-San Diego, symptoms, Obama, gene-positive, tested positive, insurance, at risk, at-risk, mother, tetrabenazine, discrimination, personalized medicine, testing, psychotherapist, stress, coming out, family, families

Pondering an exit from the HD closet
Thursday, August 20, 2009
"I felt emotionally paralyzed."
Comments (0) | Tags: Huntington's disease, AIDS, cancer, gene-positive, closet, experiment, mother, denial, wife, daughter, blog, privacy, coming out, going public, HD, sympathy, death, ritual, anonymity, orphan disease, discrimination, genetic testing, CHDI, Clinton, Genome, Guthrie, House, at-risk, symptoms

A new attitude about Huntington's disease
Thursday, July 23, 2009
If we won't help ourselves, why should anybody else care?
Comments (6) | Tags: Huntington's disease, symptoms, genetic defect, mother, brain, cells, Robi Blumenstein, CHDI, drug, gene-positive, denial, HD, activism, activist, treatment, drug pipeline, families, drug discovery, anonymous, MRI, smell, motor skills, time bomb, family, at-risk, testing, test, attitude, neurologist, clinic, HDSA, Center of Excellence, trial, Jim Calhoun, Lessons from the Ancients, fundraising, advocacy, House Bill 678, Huntington's Disease Advocacy Center

Great reasons to be a guinea pig
Wednesday, July 15, 2009
Everybody can help with vital Huntington's research.
Comments (1) | Tags: Huntington's disease, Huntington's, genetic, tested positive, brain, symptoms, suicie, activist, HDSA-San Diego, HDSA, experiments, clinical trials, scientists, guinea pig, gene-positive, at-risk, affected, drugs, Martha Nance, LaVonne Goodman, Huntington's Disease Drug Works, HDDW, mother, defect, MRI, National Research Roster, trehalose, coenzyme Q-10, omega, fish oil, blueberry, creatine, neuropsychological, cocktail, motor control, stability, A Beautiful Mind, balance, asymptomatic, treatments, Center of Excellence
Archive
Words Used in Gene’s Blog
Words are scaled by number of uses. Click on a word to trace its use in blog entries.
"can do" spirit    9/11    A Beautiful Mind    abortion    accident    accountability    activism    activist    adoption    advocacy    advocate    advocates    affected    AIDS    Alice Wexler    ALN-HTT    Alnylam    ALS    Alzheimer's    America    anonymity    anonymous    antisense    anxiety    Apollo    ASO    assisted suicide    Associação Brasil Huntington    asymptomatic    at risk    at- risk    at-risk    at-risk status    attitude    awareness    balance    battles    BDNF    behavioral    belief    Bible    biology    biomarker    biotech    biotechnological    biotechnology    blessing    blog    blueberry    Bonnie Hennig    brain    Brazil    brother    Bush    CAG repeats    CalAsia Pharmaceuticals    California    came out    cancer    care    care facility    Care2Cure    caregiver    caregiving    carrier    catholic    Catholicism    cells    cellular therapy    Center of Excellence    cerebral    Chargers    Charles Sabine    CHDI    CHDI Foundation    child    China    chorea    Christ    Christian    Christianity    chronic traumatic encephalopathy    CIRM    civil rights    clinic    clinical    clinical trial    clinical trials    Clinton    closet    cocktail    code    coenzyme Q-10    cognition    cognitive    cognitive decline    COHORT    collective    come out    coming out    compassion    Congress    conscious    consciousness    cope    coping    cortex    counseling    creatine    cross    cure    cure industry    cycle of life    Darwin    daughter    death    decline    defect    defective    degeneration    dehydrated    dementia    denial    depressed    depression    DFS    diagnosis    diet    Differential Fragment-Based Screening    Dinah Sah    disability    disabled    discrimination    disease    disorder    DNA    doctor    Don Cleveland    donor    drug    drug discovery    drug hunter    drug pipeline    drugs    dysfunction    easter    economic crisis    Edgemoor    Egypt    embryonic stem cells    emotions    energy    Enroll-HD    escapism    eugenics    evil    evolution    exercise    experiment    experiments    faceless    faith    families    family    fantasize    Fastlane    fatal    father    FDA    fear    feeding tube    fight    financial crisis    finger-tapping    fish oil    Flash of Genius    football    forsaken    Francis Collins    Frank Bennett    freedom    fundraising    gene    gene positive    gene silencing    gene therapy    gene-carrying    gene-negative    gene-positive    gene-silencing    generation    genetic    genetic clock    genetic counseling    genetic defect    genetic mirror    genetic test    genetic testing    geneticist    Genome    Genome Project    genomic    get tested    Giamatti    God    going public    Good Friday    granddaughter    grandfather    grandmother    grandparent    grassroots    grief    guinea pig    Guthrie    H.R. 678    HD    HD Buzz    HD closet    HD Parity Act    HD war chest    HD warrior    HD-affected    HD-free    HD-negative    HD-positive    HDDW    HDSA    HDSA Person of the Year    HDSA-San Diego    health    health care    health care reform    healthcare    healthy    heatlh    Hereditary Disease Foundation    Holy Week    honesty    hope    horror    House    House Bill 678    HSG    humanity    huntingtin    huntingtin suppression    huntington's    Huntington's closet    Huntington's disease    Huntington's Disease Advocacy Center    Huntington's Disease Drug Works    Huntington's warrior    hurricane    hurtling towards death    husband    ignorance    immobility    incurable    India    induced pluripotent stem cell    innovation    insomnia    instinct    Institute for Regenerative Cures    insurance    Interstate Highway System    inventors    Isaac Asimov    Isis    Isis Pharmaceuticals    israelite    It's a Bird    Jan Nolta    Jesuit    Jesus    Jim Calhoun    Jim Gusella    Jody Corey-Bloom    Johns Hopkins University    Judy Roberson    juggling    juvenile HD    juvenile Huntington's    juvenile Huntington's disease    Katie Moser    Keith Elliston    knowledge    lab    laser-guided missile    Latin America    LaVonne Goodman    leader    leadership    legacy    Leslie Thompson    lessons    Lessons from the Ancients    Lewy body disease    Lou Gehrig's    Louise Vetter    love    Lundbeck    Maracaibo    marathon    marriage    Marshall Plan    Martha Nance    mask    meaning    Medi-Cal    Medicaid    Medicare    medication    meditation    medium spiny neuron    Medtronic    memory    mercy killing    mesenchymal stem cell    metabolic    Michael Hayden    mind    mind coach    misfold    mitochondria    modifier gene    mood    mood swings    morale    mortality    mother    motor    motor control    motor skills    MRI    mutant    mutation    mysticism    Nancy Wexler    nation    National Football League    National Institutes of Health    National Research Roster    negative    nervous    Neurobic    neurodegenerative    neurogenesis    neurological    neurologist    neuron    neuropsychological    neuroscience    neuroscientist    neuroscientists    newsletter    NINDS    noosphere    Novartis    nursing home    Obama    observational study    observational trial    oligonucleotide    oligonucleotides    omega    omega-3    onset    orphan    orphan disease    outburst    outsourced    P4 medicine    Pacifici    Parity Act    Parkinson's    passover    patient    PDE inhibitor    persevere    Person of the Year    personalized medicine    Pfizer    PGD    Ph.D.    pharmaceutical    Phase I    Phase II    Phase III    Phebe Hedges    polyglutamine    positive    positive genetic test    positive test    pre-existing condition    pre-manifest    PREDICT-HD    pregnancy    premanifest    presymptomatic    privacy    Promised Land    protein    psychiatric    psychiatrist    psychoanalyst    psychologist    psychologists    psychology    psychotherapist    psychotherapy    psychotic    public    pump    Race Across America    ravaged    receptor    reflection    rehabilitation facility    relationship    relaxing    religion    religious traditions    research    researcher    Resurrection    Rhes    risk    ritual    RNA    RNA interference    RNAi    Robert Pacifici    Robi Blumenstein    San Diego    science    scientist    scientists    Scripps Research Institute    seizure    sex    shaking    Shoot to Cure HD    Shriver    side effect    siRNA    sister    sleep    smell    social justice    Social Security    solidarity    son    soul    Spanish    spirit    spiritual    spirituality    sports    stability    stem cell    stem-cell    stem-cell oversight    sterilization    sterilize    Steven Seagle    stigma    strength    stress    striatum    stroke    struggle    success    suffering    suicide    suicie    supplement    supplements    support    support group    supporters    survival    swim    swimming    sympathy    symptomatic    symptoms    synapse    synaptic dysfunction    sypmtoms    systems biology    technology    Teilhard    Terry Leach    test    tested    tested negative    tested positive    testing    testing positive    tetrabenazine    theology    therapeutic    therapies    therapist    therapy    Thich Nhat Hanh    time bomb    tinkerers    togetherness    tongue    TRACK-HD    transitions    treatable    treatment    treatments    trehalose    trial    trials    trinucleotide    truth    UCSD    UHDRS    unemployment    University of San Diego    untested    urgency    Venezuela    Vertex    Wall-E    warrior    WeAreHD.org    website    wheelchair    wife    workaholic    Xenazine    Yale