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Huntington’s Disease

Family, Huntington's Disease

More About Social Security and Huntington’s Disease

In a previous blog, I wrote about Social Security Disability Insurance and the difficulty Huntington’s disease (HD) families experience when applying for benefits and how for a HD family, who might have two (2) or more family members struggling with the disease, disability dollars are essential for their financial survival.  https://hdsa.org/find-help/healthcare-and-future-planning/disability-chat/

Applying for Social Security:  https://hdsa.org/find-help/healthcare-and-future-planning/disability-benefits-and-hd/disability-support/

I know a family in town where multiple members are struggling with HD; mom and three (3) adult children who have Juvenile Huntington’s disease.  The father/dad, a physician is still working, and is the caregiver for his loved ones at home.  To have disability benefits for these four loved ones is, no doubt, helpful.

Another family challenged by HD is the O’Donnell Family. A film by Rae Maxwell and produced by HDSA, Her Mother’s Daughter, introduces the world to Kathi O’Donnell and shows the devastating impact that Huntington’s disease (HD) & juvenile Huntington’s disease (JHD) has had on the O’Donnell family. The film is a window into Kathi’s inspiring journey as a caregiver as we see the different stages of HD & Juvenile Huntington’s disease – a rare form of HD that progresses more rapidly than adult onset.

To watch the film, click here. https://youtu.be/zXfDJ2aW4hw

We Can Never Lose HOPE……

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  As of January 1, 2020, a HDSA San Francisco Bay Area Affiliate will begin operating.  Amy Fedele is the Co-Chair, I’m the Chair.  The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the SF Bay Area that has a population of 7.1 million.

My author website is: https://www.theresecrutchermarin.com

You can read about my HD journey and the book I published, Watching Their Dance.  100% of the profits are being donated to the nonprofit, HDSA.  

 

 

 

Huntington's Disease

A Risk Worth Taking

Most people do not ponder over the term “at risk” and how these two words can shape your life; either in a good way or a bad way, depending on how you look at it.  “Life is a series of calculated risks – nothing more. Everything that you decide to do has a margin of risk.” 

John and his three (3) sisters discovered, quite suddenly, that their mother had Huntington’s disease, and were “at risk“, each having a 50/50 chance of inheriting the cruelest disease on the planet. Huntington’s disease (HD) is a rare, fatal, brain disorder that has all the symptoms of ALS, Alzheimers and Parkinson’s at the same time.  And, there is NO CURE.  What is HD

At the time, there was no genetic test for the disease, so in my mind, at risk” would be forever. To me, it meant I would live with an unknown factor in my life that could not be controlled.  I’m a planner with no spontaneity in my body. My comfort level is having control of a situation so I’m prepared, and never surprised.

So, with that said, I was unsure about living a life at risk” with the man I loved.  What would you have done if you were in my situation?

Through life experiences, I came to realize that risks are almost always necessary ingredients in the recipe that is happiness.

_________________________________________________________________________

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to this horrific disease.  A group of HD advocates and myself have formed a team to become a HDSA San Francisco Bay Area “Affiliate” to serve the HD community where 7.1 million people live. 

My book, Watching Their Dance” is available on many book websites and $7.00 is donated to HDSA every time the book is purchased.  https://www.amazon.com/-/e/B06ZY85776

We Can Never Lose HOPE….

Huntington's Disease

A World Free of Huntington’s Disease

Huntington’s Disease Society of America’s Vision (HDSA) Statement is “A World Free of Huntington’s Disease (HD)”.

Wouldn’t that be wonderful?  No more suffering, no more uncertainty, no more contemplation of whether to have a child or not; too many issues to list that affect HD families that most of the world doesn’t have a clue about.

The picture shows logo’s of companies that support the Huntington’s community in their own unique way.  Wouldn’t it bee nice if we didn’t need these companies who supply durable medical equipment, medications, etc. to support a loved one with Huntington’s disease.

Hopefully, in the not too distant future, these companies can concentrate on curing other devastating neurodegenerative diseases like ALS, Alzheimers and Parkinson’s to name a few.

We Can Never Lose HOPE……

Therese selling books at the Woody Guthrie Folk Festival in Okemah OK in July 2017

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to this horrific disease.  A group of HD advocates and myself have formed a team to become a HDSA San Francisco Bay Area “Affiliate” to serve the HD community where 7.1 million people live.  The San Francisco Bay Area deserves to have a HDSA Chapter which we will hopefully become over the next couple of years.

My book, Watching Their Dance” is available on many book websites and $7.00 is donated to HDSA every time the book is purchased.  https://www.amazon.com/-/e/B06ZY85776

 

Huntington's Disease

Help Pass the Huntington’s Disease Parity Act!

Author Therese Crutcher-Marin

The Huntington’s Disease Society of America (HDSA) has been advocating for several years to get the Huntington’s Disease Parity Act passed.

The Act would waive the Medicare two year waiting period, thereby ensuring individuals receive critical health benefits and care in the early stages of the disease.

To read an in depth description of the Act, visit HDParityActBill.pdf       AND

https://www.congress.gov/bill/116th-congress/house-bill/2770/all-info

Jennifer Simpson, LCSW Senior Manager, Advocacy & Youth Programs, at HDSA, leads the fight.

HDSA makes it easy to help get the bill passed by creating a letter to send to our local politicians to request they pass the bill.  It’s easy!!!    Please visit this website to send a letter to your Congressman(s). write-a-letter to your Congressman

Please take the time to send the letter and let’s get the HD Parity Act passed so no Huntington’s disease family member has to wait two years to have medical coverage.

We Can Never Lose HOPE……………………

 

Huntington's Disease

Prevalence of People AT RISK for Huntington’s Disease In San Francisco Bay Area

Author Therese Crutcher-Marin

In my previous blog, I presented the approximate number of folks living with Huntington’s disease (HD) in the San Francisco Bay Area. Approximately, 490 to 700.  What is Huntington’s disease?

So, now I’m looking at how many folks in the same area live AT RISK for the disease.

Statistics tell us that approximately 250,000 Americans live AT-RISK for the disease.

2.2% of the U.S. population live in the Bay Area.  So, 2.2% of 250,000 is approximately 5,500. That’s approximately how many people live AT-Risk for HD in the Bay Area.

The total number of people living in the San Francisco Bay Area affected by HD, either have the disease or living AT RISK, is approximately 5,990 to 6,200.

I believe this is a conservative number because these statistics on Huntington’s disease have been used for many years.

I used the statistics from the National Institute of Neurological Disorders and Stroke.  https://www.ninds.nih.gov Huntington’s Disease-Hope-Through

We Can Never Lose HOPE………..

I’m a Huntington’s disease advocate having lost my three sisters-in-law to this horrific disease.  Watching Their Dance, my inaugural nonfiction book, is available on many book websites like Amazon.  100% of the profits are being donated to HDSA.

Huntington's Disease

Prevalence of HD in the San Francisco Bay Area

Huntington’s disease (HD) is considered a rare disease but when you look at the number of American’s affected by the disease, it is disconcerting.

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 250,000 at-risk of inheriting the disease. https://hdsa.org/what-is-hd

Let’s evaluate the San Francisco Bay area population:

1.  The Bay Area population is approximately 7.1 millionhttp://www.bayareacensus.ca.gov/

2.  The statistics on the prevalence of Huntington’s Disease in the U.S. is approximately 70 to 100 people per million have HD.

3.  That equates to approximately 490 to 700 people in the Bay Area that are living with HD.  That doesn’t sound like many, but if you’re one of the families struggling with HD, its stressful and devastating.

3.  The total number of people living in the San Francisco Bay Area with HD is approximately 490 to 700.

I believe this is a conservative number because these statistics on Huntington’s disease have been used for many years.

I used the statistics from the National Institute of Neurological Disorders and Stroke.  https://www.ninds.nih.gov Huntington’s Disease-Hope-Through

We Can Never Lose HOPE……………..

I’m a Huntington’s disease advocate having lost my three sisters-in-law to this horrific disease.  Watching Their Dance, my inaugural nonfiction book, is available on many book websites like Amazon.  100% of the profits are being donated to HDSA.

#LetsTalkAboutHD #HDSA

 

Huntington's Disease, The Marin Siblings

Huntington’s Disease Impact Through the Generations

Phyllis Marin

Most of John’s relatives, did not know or understand the magnitude and the impact of Phyllis’s diagnosis of Huntington’s disease (HD) on the four Marin siblings lives.

Because Phyllis had HD, Lora, Marcia, Cindy and John each had a 50/50 chance of inheriting this horrific disease with no test, at the time, and no cure or therapy.  HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers at the same time, strikes during prime working years, is a long progressive disease and has no cure.  Sixteen percent (16%) of HD cases are children with Juvenile HD.      http://www.hdsa.org

Their story is not unusual and I’ve heard similar stories from families in the HD community; one of secrecy, deception and misdiagnose.  John’s father never told the siblings about their mother and they had to discover on their own why Phyllis was in Napa State Mental Hospital for 18 years.

Through the years I have come to believe their father did this to protect them, but it still seems unfair to have kept this information a secret. 

Lora, Cindy and Marcia Marin

 

 

We Can Never Lose HOPE………………..

100% of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is being donated to the nonprofit, Huntington’s Disease Society of America.  To date, $14,100.00 has been gifted to HDSA.

Author website:  https://www.theresecrutchermarin.com

 

Watching the Dance Huntingtons Disease

 

 

Huntington's Disease

Today is Rare Disease Day

In the United States, the Rare Diseases Act of 2002 defines rare disease strictly according to prevalence, specifically “any disease or condition that affects fewer than 200,000 people in the United States”, or about 1 in 1,500 people.

With that said, Huntington’s Disease (HD) is a rare disease since it affects approximately 30,000 people in the U.S.   What-is-HD

Marjorie Guthrie

The poster child for HD is the famous folk singer Woody Guthrie who died of complications from HD on October 3, 1967. Marjorie Guthrie was instrumental in the quest to heighten HD awareness, and also connecting with the HD families in the United States. She started, The Committee to Combat Huntington’s Disease (CCHD) in 1967. To read more about the CCHD, go to https://hdsa.org/about-hdsa/hdsa-history/

I’m an HD advocate, having lost my three (3) sisters-in-law to the disease. I volunteer for the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against this horrible disease that affects families for generations. I’m currently working with a group of HD advocates to organize a HDSA Affiliate in the San Francisco Bay Area which, hopefully, in a couple of years will evolve into a HDSA SF Bay Area Chapter. https://hdsa.org/about-hdsa/chapters-affiliates/

Author Therese Crutcher-Marin

100% of the proceeds from Therese’s book is being donated to HDSA. Since publication, Therese has donated $14,115.00. Her author website is: https://www.theresecrutchermarin.com

We Can Never Lose HOPE…..

Huntington's Disease

Prevalence of Huntington’s Disease in the U.S.A.

Have you ever wondered where Huntington’s disease (HD) originated? Or why it’s predominantly found among Europeans and those of European descent? What-is-hd/

Europe

Most scholars believe that European migration was what brought HD alleles into the continents of North America, South America, Australia and New Zealand, and the prevalence of HD in these regions is now similar to that of Europe, where HD affects around 40-100 per million people. (or 4-10 per 100,000)

Experts estimate that one in every 10,000 persons—nearly 30,000 in the United States—have Huntington’s disease. (10 in 100,000, 100 in a million). Juvenile Huntington’s occurs in approximately 16% of all cases. http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/hd-in-europe/

100% of the profits from the book, Watching Their Dance, an inspirational love story while living in the shadow of HD, is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Since the book was published, in April 2017, Therese has donated $14,100.00 to the nonprofit, Huntington’s Disease Society of America.

Therese at the 2018 HDSA Annual Convention in LA.
Huntington's Disease

Prevalence of Huntington’s Disease Around the World- In the U.K.

Have you ever wondered where Huntington’s disease (HD) originated. Over the years, I have been curious where and when it started appearing in people. So, I did some digging and discovered some interesting facts.

Europe has been highly significant to the history and study of HD. The greatest frequencies of HD are found in Europe and among populations of European descent. Most scholars believe that European migration was what brought HD alleles into the continents of North America, South America, Australia and New Zealand, and the prevalence of HD in these regions is now similar to that of Europe, where HD affects around 4-10 per 100,000 people. HD-in-europe/#united-kingdom

Origins 
The United Kingdom (U.K.) is the hereditary origin of many of the first cases that were identified as Huntington’s disease (HD). Scholars have traced thousands of prominent cases of HD in New England, U.S.A., back to a few families that emigrated in the seventeenth century from Suffolk in England.

Currently, it is estimated the prevalence of HD in the U.K. is approximately 12.4 per/ 100,000. Since this is a conservative estimate, which only includes people in contact with the Huntington’s Disease Association (HDA), the true prevalence of HD in the U.K. must be even higher. 

The HDA website has a wealth of information on Huntington’s disease in the United Kingdom: https://www.hda.org.uk/

We Can Never Lose HOPE……