Frances Saldana is one of the most remarkable women I know. She has lost all three of her children to Huntington’s disease (HD) – a nasty, fatal disease that steadily destroys the nerve cells in the brain – but still retains a fighting spirit and a commitment to finding a cure for HD. She is the President Emeritus for HD-Care, an organization dedicated to raising awareness about HD, and finding money for research to cure it. She recently wrote a Mother’s Day blog for HD-Care about the similarities between HD and COVID-19. As May is National Huntington’s Disease Awareness Month we wanted to share her blog with you.
COVID-19 has consumed our entire lives, and for many, our livelihoods. This is a pandemic like we have never experienced in our lifetime, bringing out in many families fear, financial devastation, disabilities, isolation, suffering, and worst of all, loss of life. But through all this, the pandemic has uncovered emotions in many who rose to the occasion – a fight and stamina beyond human belief.
As a family member who has lost all of my children to Huntington’s disease, it makes me so sad to watch and hear about the suffering that people all over the world are currently experiencing with COVID-19. This devastation is nothing new to Huntington’s disease families. Although Huntington’s disease (HD) is not contagious, it is genetic, and much of the uncertainty and fears that families are experiencing are so similar to what HD families experience….in slow motion, with unanswered questions such as:
- Who in my family is carrying the mutant HD gene? (Who in my family is carrying the coronavirus?)
- Who in my family will inherit the mutant HD gene? (Who will get infected by the COVID-19?)
- Will my loved on live long enough to benefit from a treatment for HD? (Will there be a vaccination soon if my loved one is infected by COVID-19?)
- How long will my HD family member live? (Will my affected COVID-19 loved one survive after being placed on a ventilator?)
- Is my HD family member going to die? (Will my COVID-19 family member die?)
In watching some of the footage of COVID-19 patients on TV and learning about the symptoms, it appears that those with a severe case of the virus go through similar symptoms as HD patients who are in the late and end-of-life stages: pneumonia, sepsis, pain, and suffering, to name a few, although for HD families, the journey goes on for years or even decades, and then carries on to the next generation, and not one HD patient will survive the disease. Not yet!
Scientists are working furiously all over the world to find a treatment for COVID-19. The same goes for scientists focused on Huntington’s disease research. Without their brilliant work we would have no hope. Without funding there would be no science. I have been saying for the last 20 years that we will have a treatment for Huntington’s disease in the next couple of years, but with actual facts and successful clinical trials, there is finally a light at the end of the tunnel and we have much to be thankful for. I feel it in my heart that a treatment will be found for both COVID-19 and Huntington’s disease very soon.
The month of May happens to be National Huntington’s Disease Awareness Month. Mother’s Day also falls in the month of May. Huntington’s disease “Warrior Moms” are exemplary women, and I have been blessed to have known a few. Driven by love for their children, they’ve worn many hats as caregivers, volunteers, and HD community leaders in organizations such as HD-CARE, HDSA, WeHaveAFace, Help4HD, HD Support &Care Network, and many others.
The mothers have often also been forced to take on the role of breadwinners when the father of the family has unexpectedly become debilitated from HD. In spite of carrying a heavy cross, HD Warrior Moms persevere, and they do it with endless love, often taking care of HD family members from one generation to the next. They are the front-line workers in the HD community, tirelessly protecting their families and at the same time doing all they can to provide a meaningful quality of life.
Many HD Warrior moms have lost their children in spite of their fierce fight to save them, but they keep their memory alive, never losing hope for a treatment that will end the pain, suffering, and loss of life. Many HD Warrior Moms have lost the fight themselves, not from HD, but from a broken heart. These are the HD Warrior Moms.
We salute them all. We love them all.
CIRM is funding several projects targeting HD. You can read about them here.