It has been several weeks since the news emerged regarding UniQure’s trial that successfully slows the advancement of Huntington’s Disease (HD), and I still find myself overcome with emotion. I continue with my daily activities, such as grocery shopping, working out, and tidying up, yet the tears flow unexpectedly. I feel joy about the announcement, but my body seems to react differently. I have come to understand that I am going through a period of grief.

The community is filled with a myriad of emotions, which is entirely understandable.

This is the uplifting news the HD community has been eagerly anticipating. UniQure revealed that its experimental gene therapy can decelerate the disease’s progression. The therapy is undergoing clinical trials to reduce huntingtin levels while also assessing safety. As a clinical trial, it is not currently accessible to the community, but this marks the first time a disease-modifying treatment has appeared on the horizon. This is a significant step forward for the HD community, and we are all in celebration.

However,

We remain entrenched in caring for our sick loved ones. Whether you are raising a child with JHD, providing care for a parent, or supporting multiple individuals affected by the disease, the reality of our everyday lives has not shifted. For many of those we cherish, this breakthrough has come too late.

There is concern that, if approved, this treatment may not be attainable for everyone. We fear it may not be offered in our country, we may not qualify for it, the cost may be prohibitive, or our symptoms may be too advanced. We are also aware that there are numerous obstacles to navigate before this treatment reaches the community. It must undergo peer review and receive FDA approval, and that is just in the U.S. After that, it has to be authorized and distributed worldwide. The thought of getting our hopes too elevated feels perilous.

This announcement evokes memories of all those who have already suffered and lost their fight against this disease. The potential treatment is too late for them, but that does not prevent us from wishing things were different, imagining them back with us, benefitting from this as well. Just think of how transformed our lives could have been.

Huntington’s disease is intertwined with our identity. Whether we are gene positive, gene negative, or untested, we have put in considerable effort to accept our life’s circumstances. This announcement signifies a significant change in how we perceive ourselves. Although this transition is positive, it is also discomforting. Now there exists a chance for a brighter future, and that can be disconcerting because we are uncertain about what our future may hold.

Regardless of how this news has resonated with you, and regardless of the emotions you are navigating, even if you cannot completely pinpoint what you feel, it’s alright to experience your feelings. Your emotions are valid.

Living with Huntington’s disease within the family is highly complicated, and contemplating this potential treatment is equally complex. We must not only reflect on the implications for ourselves but also consider everyone in our family.

And soon, if fortune smiles upon us and this treatment is authorized in our respective countries, we will confront another series of crucial questions. Do I want to pursue this treatment? Is this the correct treatment for me? It is an intensely personal decision, and every individual has the right to make choices regarding accessing treatment, or opting not to, much like decisions about undergoing genetic testing or having children at risk. This potential treatment entails an extensive brain surgery. Perhaps with huntingtin reduction becoming a plausible approach, it might propel other developments forward, possibly those that are less invasive.

There are countless uncertainties.

For now, I am concentrating on the renewed hope this announcement has instilled in me, striving to shift my mindset from being someone who is certain to develop HD due to being gene positive, to someone who might not. I must reconcile with this new reality.

I am immensely grateful to everyone who has dedicated themselves to reaching this juncture, including the scientists diligently searching for a treatment, the pharmaceutical companies investing in effective solutions, and the courageous individuals who have participated not just in this clinical trial but in all previous ones. I am also thankful for the patient advocacy organizations that have supported us throughout this journey, helping us navigate not only clinical trials but the intricacies of our daily lives. We are all part of an incredible community, and we will stand together to support one another, come what may.

Erin Paterson is a writer and the author of Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community and All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness.