Survivor’s Guilt With Huntington’s Disease

Survivor’s Guilt With Huntington’s Disease

by Ginnievive Patch

When it comes to Huntington’s and Juvenile Huntington’s disease, guilt can play a huge factor in the lives of those who test negative and are parents, children and siblings of someone very ill.

It is also a subject that can get thrown in the face of the ones without the illness. Many times, my own spouse and one of our oldest sons have said, “What are YOU depressed about? You are not sick.” This may be true, but watching your whole family die before you, especially knowing you had children who now have it, carries a burden like no other.

Survivor’s guilt. Imagine having three siblings, and you test negative. Imagine all your children and spouse testing positive. Imagine being the only child without HD. The questions, Why me? Why am I the healthy one? Why me? Why do my kids have to suffer with HD/JHD? Why my family? Why my parent? Why my sister? Those thoughts trample through the brain with hypervigilance. Such thoughts can actually cause severe depression. Wait! What? Testing negative can cause depression?

The answer is yes. Survivor’s guilt can cause depression. Thoughts like, “What gives me the right to be happy when my sibling will die from it?” can race through your mind. These are difficult issues that the family has to deal with. Young children with a sibling who gets all the attention because of JHD may even get really jealous of the sick sibling and wish to be sick, too, because they are in the shadows with no normal around.

Dealing with survivor’s guilt is multifaceted. Counseling, support groups, and journaling can all help. Online support groups are wonderful. Advocacy helps. Help 4 HD, Wehaveavoiceglobal, and HDSA are all groups that need help. Reading and teaching is another way to deal with it. Admitting your feelings is the first step. Tell someone, anyone, how you feel. Seeking proper medical help if depression is taking over is one thing I say really helps. Learn to forgive yourself for testing negative, for not having the disease.

Other family members may act in what seem to be inappropriate ways, such as withdrawing from the person who is ill. It helps to remember that they may be suffering from survivor’s guilt and cannot handle being around the person who is sick. Learn to forgive them, too.

Taking a break from HD can also be beneficial. It is especially important to arrange alone time with a non-JHD child, away from the sick sibling. Time alone with the well parent is important for the kids whose parent has HD. HDYO (Huntington’s Disease Youth Organization) and NYA (National Youth Alliance) also offer great camps for kids in HD families.

Things to remember: YOU did not do this on purpose. YOU did not get to choose to test negative. YOU would never have harmed a child intentionally. YOU are a blessing to the ones who are ill. HD/JHD teaches unconditional love, but it can come with a price of overwhelming guilt. Take a deep breath and stop holding yourself hostage with guilt.

 

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Bioethics in Huntington’s Disease Treatments and Therapies

Katie Jackson is a strong advocate for the Huntington’s and Juvenile Huntington’s disease community and is president/CEO of Help 4 HD International, which has been on the forefront of the struggle to increase HD awareness and generate funds to combat Juvenile HD. In one of her weekly blog radio broadcasts, she hosted Dr. Mark Yarborough on the topic “Bioethics” and discussed the roles bioethics plays in developing treatments and therapies for Huntington’s and Juvenile Huntington’s disease. Dr. Yarborough is a professor of philosophy and dean’s professor of bioethics at the University of California, Davis. He has published several scholarly publications and lectured numerous professional and public organizations on bioethics.

 

Bioethics is the study of the ethical issues emerging from advances in biology and medicine. It is also moral discernment as it relates to medical policy and practice. Bioethics is basically divided into two areas:

  • Healthcare ethics
  • Research ethics

There are regulatory bodies that monitor and control ethical issues that might arise in each of these areas. For clinical environments, such as hospitals, there are Hospital Ethics Committees and Institutional Review Boards (IRBs) that review and make decisions about clinical research. IRBs appear not only in academic but also in commercial sectors. This is compulsory for any organization that receives federal funding for research on human subjects, and it also a prerequisite for organizations to gain approval by the FDA (Food and Drug Administration) of an application for any investigational new drug. This means that all clinical research, including that for Huntington’s disease (HD), in the United States goes through an IRB review process.

Huntington’s disease occurs when a DNA sequence at the end of the huntingtin gene repeats too many times. The mutant gene then produces a toxic protein that damages neurons. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000+ symptomatic Americans and more than 200,000 at risk of inheriting the disease.

Though the cure for Huntington’s disease is yet to be discovered, there has been research into a gene editing system, “CRISPR-Cas9,” which has generated excitement in scientific circles for its potential to cure diseases caused by a single defective gene, including HD. But editing genes with this technology is risky because cutting strands of DNA can lead to unintentional gene edits, causing dangerous off-target effects. Due to reasons such as this, regulatory bodies have been set up to monitor and control risks of ethicality involved in bioresearch.

The major roles of IRB in research oversight are (and are not limited to):

  • Ensure the safety of research participants. This is the minimization of risk that volunteers might undergo in the course of the research.
  • Ensure that the potential benefits of the research, to both participants and society, far outweigh any risks the research participants will undergo.
  • Ensure there is fully informed consent of the research participants.

IRBs ensure ethical application of science in the pursuit of a cure to various diseases for the maximum benefits of every stakeholder involved.

People, especially the families of victims suffering from diseases such as HD and Alzheimer’s, have considered the IRB review process to be slow in approving new methods and treatments, but as Dr. Yarborough stated, “The review process is a very formalized and bureaucratic process that involves investigators producing a very exhaustive application and an awful lot of paperwork that covers the background of the science, that answers the questions about the problem the clinical trial was designed to solve, and also information as to why it’s important to do this study, as well as the process for conveying that information.”

This has been the major drawback in the approval of novel medical developments, but there has been some ongoing conversation about improving the review process.

Juvenile Huntington’s disease (JHD) is a special case of Huntington disease which appears in persons below the age of 20. Most institutions have IRBs that specialize mainly in juvenile cases. Lots of questions have been raised by the JHD community about the restrictions placed on underage treatments and tests for children suffering from JHD. This is a case of whether it is right to place juveniles under undue risk for someone else’s benefit since children do not have the legal rights or intellect to make the decisions for themselves. There are also controversies and complications to consider in experimenting on children.

According to Dr. Yarborough, this concern can be bypassed or overcome by creating a community of patients and researchers on related diseases, thereby having its own oversight and regulations. This might not be possible, primarily due to legal reasons. Sacrifices will also have to be made on the part of the members of these communities to help move the field forward, which entails undergoing life-threatening risks.

Most IRB committees are not knowledgeable about all the different diseases that are being studied at any point in time, which is another limitation of the current system. It is not necessary for IRB members to know much about these diseases or to have scientific expertise on these diseases, let alone be familiar with the communities who are affected by the diseases under study. That’s why it’s very important, and even encouraged, according to Dr. Yarborough, for members of these disease communities to volunteer their services on IRBs which are spread across the country.

Dr. Yarborough concluded with these points:

  • Ethics is about making sure you’ve got the right people sitting around the table to deliberate about these really complicated questions.
  • Frequently, the case is that there are people who have power but lack foresight and people who have wisdom but have no access to power. The job of ethics is to try to get those people in the same room together at the same time. There’s an abundant amount of wisdom in the patient community that doesn’t necessarily spill over into the research community. Therefore, patient advocates must ensure they are not just a voice but also an equal voice at the table.
  • People must be willing to invest a lot of time and to build relationships and stick with processes. This may sound challenging at the outset, but it’s worth it.

 

References

Listen to the entire interview on BlogTalkRadio: http://www.blogtalkradio.com/help4hd/2018/03/07/bioethics-and-irbs-for-huntingtons-disease

A CRISPR cure for Huntington’s? Retrieved from https://www.fiercebiotech.com/research/a-crispr-cure-for-huntington’s

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