Why I Dislike Using the Word ‘Hope’ When Discussing Huntington’s Disease
I’ve been a part of the Huntington’s disease (HD) community since my mom was diagnosed in 1995. I was 9 at the time. The gene mutation responsible for the disease had been discovered two years earlier, and community leaders were excited about the potential of the discovery to lead to new treatments.
Since then, my brain has been infused with the word “hope.” I hoped that we were close to a cure, or at least a treatment that would stop or slow HD from taking over the body.
In 1995 my mom was just starting to show subtle symptoms, but she was still working, exercising, and living a full life. My family hosted a yearly fundraiser and told everyone in our community that their efforts were providing hope for our family and many others.
Many nonprofits and patient advocacy organizations have used the word hope. It’s in their mission, vision, tag line, and marketing. I helped start and run one of these advocacy groups, so I’m pointing the finger at myself, too. We held on to hope and truly believed there was still enough time for my mom to gain access to new medicines.
After my mom was diagnosed, I watched her slowly lose her ability to do everything, and then die in 2011. I’ve watched many other family friends lose their lives to HD. My hopes for them turned out to be nothing more than wishful thinking.
I know I won’t get HD thanks to a genetic test, but I’ve made many friends in the community who are either still at risk or who know they have the gene mutation. Many are now in their 30s, which means they’re staring the HD monster right in the face and hoping that they don’t become symptomatic. But I can’t hang on to hope anymore. It just doesn’t seem fair to anyone.
The HD community recently received two gut punches when Roche decided to pause dosing in its Phase 3 clinical trial GENERATION HD1, and Wave Life Sciences stopped its Phase 1b/2a clinical trials of two potential Huntington’s treatments. These trials were the furthest along and held the most potential for a Huntington’s treatment.
As I perused a handful of webinars and articles by patient advocacy organizations, physicians, and pharmaceutical companies, I kept seeing a similar message in response to the news about the trials: “It’s OK, because the pipeline of clinical programs is strong. Stay hopeful.”
I don’t disagree that the HD treatment pipeline contains the potential for success, but I wish we would all stop talking about hope like broken records. There is a large population of people with HD who have lost all hope because they don’t have time to wait for future therapies. I don’t believe it’s fair to keep pumping the word hope so broadly when HD is attacking people every single day.
I’m not saying that my hope is dead, or that I don’t believe we will ever have treatments for HD, but I can’t keep using that word. I think we should stop talking about hope and start talking about realistic expectations and timelines. Once we all better understand the reality, maybe it can light a fire under many of us to figure out how to get involved and speed up these timelines.
Can we each do a little more? That way we can rely on our own actions rather than on the hope of others.
In my previous column, “How the HEATED Project Can Benefit the Huntington’s Disease Community,” I talked about the Huntington’s Equal Access to Effective Drugs Project as an opportunity for us all to think differently and ask ourselves what more we can do to contribute. Maybe this is your opportunity to get involved and bring your unique skills into the HD community. Maybe this is your opportunity to start sharing your story and using your voice to bring about change. I believe that strategic actions can inspire the change needed to speed up new treatments for HD instead of just hoping others take care of it.
Please share your thoughts in the comments below or find me on social media. I look forward to hearing from you soon!
***
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
About the Author
Min
A nice article! When people got HD, their family members also need a lot of emotional supports. It is torture because the disease is progressive. Although HD is no cure, there are many non-pharmacological treatments for the patient's quality of life.
LARRY HAM
BJ,
THANKS FOR BEING INVOLVED IN HD. I WAS A GUINA PIG VOLUNTEER FOR HD AT EMORY BACK IN THE 90'S INTO 2005 WHEN MY FATHER PASSED WITH IT AND HE AND HIS MOTHER BOTH HAD IT. I TRY TO HELP FOLKS HERE IN ATLANTA AND I FINALLY TOOK THE TEST 3 YEARS AGO AND I WAS POSITIVE AND MY YOUNGER BROTHER WAS NIOT. IT GOT ME TO START MY MINISTRY CALLED HOPE OVERFLOWING IN ATLANTA. WWW.HOPEOVERFLOWINGINATLANTA.ORG, AND I AM SPREADING HOPE ALL OVER ATLANTA AND GOD IS OPENING THE DOORS. I WAS DIAGNOSED BACK IN MARCH THAT I HAVE ESOPHAGEAL CANCER, SO I NOW HAVE 2 INCURABLE DISEASES AND I AM ON TOP OF THE WORLD BECAUSE THE ONLY CURE THERE IS, IS JESUS!!!! PLEASE CHECK OUT SOME OF THE VIDEOS ON OUR WEBSITE AND YOU WILL HOPEFULLY BE ENCOURGED !!!!
B.J. Viau
Amen, Larry! I love the website and all of your efforts. I am in Atlanta from time to time and would love to meet one day and learn more about your ministry efforts. God bless!
Hala Hall
Totally agree.
This "hope" that gets bantered around is like having the rug pulled out from under you...repeatedly.
My only "hope" was not to get jaded BUT every time there is a new treatment I do allow myself that flash of "MAYBE this time."
But the reality is, unless a cure is discovered TODAY and is available to ALL HDers (not just those in the early stages...and yes, I know that they want only those for studies because it will give a more positive result then using someone, like my son who is in the end stages)
I have given up real hope that anything will save my 40 year old...and the cure would have to also reverse the damage HD has done to his life.
Have watched mother-in-law (50 years old), husband(the lost of a truly remarkable man @50), a son(a genius, top 1% in every subject...gone at 30. A juvenile HDer). So for me it's been over 40 years of hope
And yet the optimist in me does hope
B.J. Viau
I feel for you! It's truly an unfair position for every one of us from an HD family. It's hard not to jump in head first with these "promising" treatments, but it's also frustrating to hear from scientific professionals who come out after the Roche news and say "well I didn't really think that was going to work anyway". If that was the case, why didn't they come out and speak about this while everyone was jumping in head first?!? Thanks for sharing. God bless!
ALBERTO Rodriguez
B.J.,
I read all these post from our community of families who have a loved one who become afflicted by this debilitating disease HD. Since my wife's diagnosis in 2016 I have seen the woman, mother, wife and best friend disappear slowly before my very eyes. Our sails were totally deflated this year with the Roche trial treatment setback. I was raised to honor and praise God, but as these past years have passed, I have cling on to that word "HOPE" as my sign of faith instead of praying to God. Being more a man of science most of my adult life, I look to the science community to finding a cure within my lifetime to wiping out HD. I know in the next few years my wife may have left of her independence, I look forward to her conversations, laugh and determination to making the best of what life has to give. Thank you for your commentary. The word "Realistic" resonates as well within my soul.
B.J. Viau
Thanks for reading and for sharing your personal story, Alberto! I do believe the science community will prevail and we as the community can help them get there. God bless you and your wife!
Harriette C. Herkert
Very interesting article.
Albert COUNET
(English is not my own language, sorry for mistakes)
I'm a member of the Belgian (Frenchspeaking) Huntington League (there is also a Dutchspeaking one as Belgian is a bilingual country...). Your statement raise a very sensible point. We need to communicate honestly i.e. telling the truth, not giving unaccessible dreams, but in the same time helping our loved ones to live their fight against HD. We currently use a statement from Prof Landwehrmeyer "Huntington, the most curable of incurable diseases"...but always adding that in the field of bio genetics, "short term" means at least 7 years... Not easy to give hope to people with 42-44 triplets replications in their early forties...But without a minimum of perpspective, and hope, their lifes would be unbearable. Thus yes, when trying to give hope and talking positively, I sometimes feel more of a "pious liar"...
B.J. Viau
Thanks for reading and for your comments (your English is good!). Everyone is different and some may actual need "hope" regardless if it's truly false, but I do think others need more realistic expectations so they can properly plan their future. I'm hoping we can all ban together to accelerate treatments and truly bring hope to reality!
N
"I don’t believe it’s fair to keep pumping the word hope so broadly when HD is attacking people every single day."
Sorry, but you don't get to decide what term people use or whether or not it is 'fair'. People have the right to their emotions. My two best friends, brothers, both have Huntington's and I am going to keep having hope and keep telling them to have hope. When a person is dying of a brain disease, hope is about as good as it gets.
B.J. Viau
Appreciate you reading and providing your comment. I'm not telling anyone how to act. It's everyone's right to use whatever speech they'd like. I've just heard the word hope used for to long so I don't intend to use anymore. God bless!
LARRY HAM
I AM 71 WITH HUNTINGTON'S AND ESOPHAGEAL CANCER, ANOTHER INCURABLE DISEASE. I SENT YOU A COMMENT LAST WEEK ON HOPE AND NEVER SAW IT IN COMMENTS OR ANYPLACE ELSE. I HAVE A VIDEO MADE BY OUR CHURCH THAT MIGHT HELP BUT NO ONE HAS GOTTEN BACK TO ME??
B.J. Viau
Hi Larry - I am just getting back to all the comments now. Look for a response to your message soon. Thanks for your thoughts!
Angie Pyles
Dear readers.
My husband passed from hd in February. He was diagnosed six years before he passed away. I have two children in their early thirties that are at risk. One has children. The other does not. I pray for a cure or treatment to stop this disease so that my children and their families do not have to suffer through what my husband (and I) did. I have no idea what I could do to help. I have no medical training whatsoever. I did take care of my husband in our home through it all so I would be glad to share my experiences with anyone who needs someone to share and listen. I’m so sorry for all that have to go through this and pray for you all.
B.J. Viau
Thanks for commenting and sharing your story, Angie. Sounds like you've already done so much. I always encourage people to just get involved and stay aware of what is happening in the community to they best of your ability.
Melissa
Yesss. I'm not hopeless, I'm working hard to live the best quality life I can. But these feel-good platitudes?
The lucky 'hopeful' with time and energy and money to run 5ks offer zero hope to patients running gofundmes. The people still working, on disability, symptomatic and declining, working an equally full-time job to manage the disease.
In this community, hope has become the buzzword for virtue-signal fundraising. Meanwhile life goes on for the patients.
Thanks for saying so :-)
B.J. Viau
Couldn't agree more, Melissa. Lets fundraise for reality and not false promise.
Ann Jones
Hi BJ, thank you for putting into words my own thoughts! I too have been involved with HD for many years with the gene in my husbands family although we had no knowledge of that when we married. He was diagnosed in 1992 as symptomatic and by then we had two beautiful daughters. When the gene was discovered in 1993 it was what we had all been waiting for and we felt sure a cure was around the corner. My husband passed away in 2009 and both our daughters are now symptomatic and I have replaced the word "cure for HD " with "care for HD". I still feel hopeful that at some stage in the future better treatment/medications will be found and who knows maybe a cure?? In the meantime its important for us to endeavour to create awareness, more education and much better care and understanding, not just for the individual with HD, but for all their supporters whether it be family, friends, advocates, professionals.
B.J. Viau
Thanks for sharing, Ann. I do hope we one day get to a treatment that acts like a cure, but until then care is the best we have. I do think it's OK for HD families to outwardly share the real struggles that HD brings in hopes to motivate those who are helping make new treatments accessible (pharma, government regulators, clinical trial sites, insurance) to work faster and harder for those that need them.
Belinda Lindsay
I agree with your article on hope. My husband passed 25yrs ago and now my daughter is in her last stage of HD. We had hope but the past 20yrs of her illness all you hear is hope. The sad part is 25 yrs after my husband past we still do not have a treatment for this horrible disease.
At this point in time I do not think man is intelligent enough to figure out a treatment.
All we have right now is our faith in our Lord for he has the power to give us a cure.
B.J. Viau
Thanks for sharing, Belinda. It's not easy to find treatments for conditions like HD, but I am confident man will come through. I do believe faith in the lord is stronger than hope for a cure.
Nikki
I totally agree with you- I thank you for writing this article as a mother who has H. D.