My Prespective: Helen Lok

Freelance Article by Helen Lok

Changing Our Dialogue about Batten Disease

Every day, families across America and around the world are facing an ongoing struggle. For each individual family, that struggle will be different. But what all families have in common is that everyday life inevitably brings its own set of challenges that all of us face. Some families face a more demanding struggle, and for these individuals, that struggle will come to play a huge role in defining who they are. But how we talk about that struggle and define it is also important. We talk about Batten Disease widely within the supportive community which has come together for solidarity, but it remains relatively unknown along with other NCLs (neuronal ceroid lipofuscinoses) in the mainstream community. Yet the more we talk about Batten Disease – as well as become more self-conscious about the language we use – the more we are able to reach out to others as well as spread awareness.

Research and Awareness

Medical research often operates in a variety of ways. There are particular studies conducted by institutions and a focus on major as well as common diseases. While the government and private companies contribute to and often subsidize this research, many organizations also depend upon the support of the general public to help raise funds. Common diseases which affect a high number of the population such as cancer receive publicity through fundraising campaigns and other charity events and sponsors, and rightfully so. But NCLs like Batten Disease remain largely in the dark, and investing in research can be challenging. In recent years, there has been a breakthrough in potential treatments as well as cures, including a new drug and stem cell treatment. Stem cell treatment is a promising field because it also opens up possibilities for cancer patients and other terminally ill people. While investing in specific studies related to Batten Disease is essential, the fact that stem cell research is ongoing remains an optimistic prospect for many people who have been affected by NCLs.

However, some of the best chances of increasing research and offering support is to increase its exposure in the larger community. This can be done in a variety of ways, including discussing NCLs as a whole on a larger scale, holding more fundraisers, writing to our representatives, and publishing more information about the disease. This also means expanding the list of resources which are available to people who are facing the illness, including potential treatments and their pros and cons from a first-person perspective as well as expert medical advice, how to cope emotionally with Batten Disease (which can commonly result in psychiatric problems as well as the emotional burden of the disease itself), and how loved ones supporting a family member can cope themselves as well as access medical and financial services. Lifestyle changes such as improving diet and habits and getting out in nature are important areas of focus, empowering those living with Batten Disease to lead a “normal” lifestyle as much as possible. Over time, the level of “normal” will change, but there needs to be support every step of the way and the chance to make the most of the time which is given, which is where ecotherapy and other practices can prove useful and where further research should be pursued.

Opening Up Discussion

We must also address potential stigmas which inevitably come with every disease, and help people understand just what Batten Disease is all about. Just as importantly, we must be aware of our dialogue. Kate Granger, along with other critics, astutely observed that using certain language can actually be disheartening to patients suffering from terminal illnesses like cancer. While “strong” and “fight” may be empowering for some, for others, it may not be an accurate metaphor. When we discuss diseases like Batten Disease, we must be extremely aware of this. This is not a disease where any “victory” is present, and therefore we must be careful how we address it, as well as comparing it to diseases like cancer which are drastically different in many ways.

Most importantly, we must provide a support system through awareness which allows patients of Batten Disease to be open about their experience if they feel the need to talk about it. Our hope lies with the research, but ultimately, it is talking which is the key to making headway in this serious disease.

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