Another Reason Why Awareness Matters

I keep coming across things that show why raising awareness about Huntington's Disease matters. Reasons that all of us who are some how affected need to educate those around us so that they know what it is. Raising awareness will stop stories like one I recently read from happening...

Throughout the month of May, the HDSA has been sharing daily stories of people that are living with HD. Some are very inspirational, some are heartbreaking and some bring hope. But one of them made my head want to explode. It was one that highlighted a lot of the misinformation that people have about this disease.

The story that I read was written by a mother who's daughter was in her mid 20's and had just received a diagnosis of Huntington's Disease. She told the story of how her boyfriend's father and brother were diagnosed with HD while they were dating. But his family told her that only men got it. That it never affected women. Yes, you read that right. They seriously told her that. I would beg to differ since Robert's mother, sister and cousin have all been infected by the Huntington gene.

So, needless to say, this lady was overjoyed when she was told that she was having a girl because that meant if the dad did have the disease, her daughter wouldn't inherit it. They broke up and lost contact before her daughter was born so this mother never knew that her daughter's father also inherited the disease. Imagine her surprise when her daughter was diagnosed with HD after she had been told that females couldn't get the disease.

Awareness matters! Miseducation, misinformation or overall misunderstanding cause problems that lead to stories like this. We have a duty as those exposed to Huntington's Disease to educate those around us and raise awareness so that people are getting true and accurate information.

I ❤ Someone with HD

I just read something that got my blood boiling big time. I wanted to throw something at my computer screen or hunt down this person that wrote it and wring their neck! But that person was too ashamed to even say their name - the person chose to post as confidential. I wonder why.

So, here is how the story goes...

I was searching for a t-shirt that I had seen a couple of weeks ago. It said "I ❤ Someone with HD". So that is what I googled. The very first search result was titled "Don't Marry Someone with HD". It turns out that this was a chat forum that somebody had started. I was curious as to what this person had to say so I clicked and looked at the forum.  This lady - because she refers to herself as a mother of some children - went on and on about how HD ruined her life and the life of her kids. She even went on to say that people with HD shouldn't get married or have children because it will ruin their lives. Apparently she was very bitter that her husband was diagnosed HD and had never told her that he might have it.

Every person has their own thoughts and opinions on the issue. I can respect the difference of opinion and won't be telling you if you are right or wrong. It is not my place.
 
Instead, I will share the reasons why I married my husband even though I knew he was HD positive and even though I knew that I had not chosen an easy path. I did it because of the simple fact that I love him with all of my heart and cannot imagine my life without him in it. I wouldn't have traded the last 10 years of our life for anything and look forward to many more amazing years with him. We have had a great time and made some wonderful memories that I will cherish for the rest of my life. If I had walked away from the man that God had chosen for me simply because it was going to be a struggle at some point down the road, I would have missed out on so much. I have always said I would rather have 10 minutes of happiness with the man I love versus a lifetime of never having had the chance. I still feel that way today.

Robert's grandmother always said that if she had known that her husband had HD, she never would have had children. She never would have taken that chance of her children inheriting the disease. I do understand that. But the one thing that I go back to is this. She had 3 children. Only 1 of them inherited the disease. The other two do not have it. You have no way of ever knowing if your children will get the disease or if they will be spared. Then, Robert's mother had 5 children. Only three of the five have the disease. And I know there are a lot of people out there that can honestly say the world is a better place having had Robert in it. I know I certainly think so.

The lady in this forum said she was going to become an advocate to support the idea that people with HD should never get married and never have children. Why not? Do they not deserve the chance at the same kind of happiness as everyone else in the world? Do they not deserve to lead normal, quality lives as long as they can until the disease takes over?

I do get that the disease can wreak havoc on more than just the person who is infected. As someone told me, it is more than just the person caring the disease that lives with it. The friends and family of the one infected live with it, too. It certainly isn't an easy road to walk. But, they are people just like everybody else and they deserve happiness just like everybody else. Leading a normal life and creating great memories will help to get a lot of people through the more difficult years to come.

Thankfully, most people in the forum responded by calling her out on her negativity and told her that she was wrong in her thoughts. I would have shared a few words with her, too but it seems the forum was closed for additional posts so I missed out. But, for anybody else out there, I just want to go on record that choosing not to marry someone because of something that will happen down the road at an unforeseen date. Would you rather have 10 years of wonderful memories with a person before they got sick or be alone and miss out on those memories because you knew they were going to be sick? I know my answer. Do you?

Not Talking About It Is Not The Answer

At a recent support group meeting, we were joined be a young girl. She is in her mid to late 20's and had recently been told she was gene positive for Huntington's Disease. She had lost her mother recently to the disease and her brother was in the advance stages of the disease. Even though she was not experiencing any of the symptoms, she made the difficult choice to determine if she had the disease. So, when she came here for the first time, she was dealing with a lot.

At the end of the meeting, she stayed to talk and actually asked Robert and I several questions. We did our best to answer them. Then, there was another lady who joined in the conversation. She was an older lady who was married to a gentleman who was in what would be classified as mid-stage. He showed obvious signs of chorea and was having trouble with coordination and some cognitive issues as well. The only thing that she really said was that the young lady should not talk about it and never tell anybody that she had the disease. It should never be discussed.

That bothered me. While I do understand that you might not want to necessarily share the information with your place of employment or your life insurance company, you need to talk about it. Your friends and family need to know about it. Others that have no experience with this disease and have never heard about it need to know about this disease. It has to be talked about.

One of the problems with Huntington's Disease in years past is that it was never really talked about. It was always that mom, dad, grandpa or whatever family member it was, was just sick. As a result they were often thought of as drunk or misdiagnosed as schizophrenic or another mental disorder. They might be told they had any of a number of disease but the one that the person really had. Because nobody was talking about. Because nobody understood the disease or knew that it was really what Aunt Sue was suffering from. So, not talking about it is not the answer.

To raise awareness, it has to be talked about. People who know about the disease because of a family member, a friend or even the person themselves has it needs to talk about it. In situations like Robert, this young lady and many others, it needs to be shown that even though the disease will kill you eventually, it does not mean that life has to end. Many people with HD have had wonderful lives even after their diagnosis. Granted, some of them got diagnosed before they began experience symptoms and not everybody has that luxury. But I have had the opportunity to see people that are in the mid stages of the disease and even some in the later stages of the disease. They all have been able to lead lives they could be proud of while living with the disease.

What I am saying is this: We have to talk about the disease. To raise awareness of this disease and the need to find a cure we need to talk about it. While you may not want to tell the world that you personally have it, you can still work to educate people so that they are not uninformed.

So, if you know about it, if you have experience with it in any way shape of form, you need to tell others about it. Educating others will raise awareness. Educating others will help to spread the word and give us a better chance of finding somebody that may be able to find the cure to put an end to this dreadful disease that plagues generation after generation after generation.

Huntington's Disease Awareness - Why It Matters

Over the last couple of years, May has become a very important month to me. It is the month that has been designated as Huntington's Disease Awareness month. The goal is to raise awareness of the disease and how it affects not only the person with the diagnosis but also the family and friends around them. Because awareness of the disease matters.

This is something that is very close to my heart and the hearts of many of my family members because we are that group that is living with Huntington's Disease as a day - to - day reality of our lives. It may not be something that has an obvious impact on what I do every day, but it is there, constantly in the background of my thoughts. It is the reality of being in love with someone who carries around a positive diagnosis of Huntington's Disease.

One thing that makes all of this hard is the lack of knowledge that so many people have of Huntington's Disease. As I have always said, I know that better than anybody because I was one of them until Robert walked in to my life almost 11 years ago. When he first told me about it, I had no clue what it was. I had never heard of it before. So, I get the blank stares. I was one of them. But we need to change that. We need to raise awareness of this disease so that others know about it; so that others are aware of it and what it means. Raising awareness and knowledge about HD is important to help gain understanding of what the people or going through.

My knowledge of HD has changed how I view a lot of things around me. For one, when I see that person who looks like they are stumbling around like they are drunk, I wonder if that is really the case. Many people with HD appear to be drunk without a drop of alcohol in them. Prior to 1993, it was much more difficult to test for HD and many people were often misdiagnosed with other issues. The limited amount of knowledge about the disease and difficult testing and diagnosis of the HD gene. So, many people were walking around without the knowledge of HD. Understanding how the disease can affect a person matters.

Plus, even now, when we know so much about it, there is still a lot of the unknown.  It is hard to receive proper treatment for the symptoms a person faces. It is very hard to find a doctor that specializes or has adequate knowledge on how to treat an HD patient. In a previous blog, I talked about how Robert was given a medication to treat symptoms of HD when it wasn't even HD. If this first neurologist that he went to had more knowledge of HD, she might have understood that what he was experiencing had nothing to do with HD. Luckily we have been able to find a more experience neurologist in our area through recommendations of people in our support group. But, not everybody is as fortunate to live in an area that has a truly knowledge doctor. Raising awareness for doctors and teaching them about HD so they can adequately treat patients matters.

So, I hope that you will take a moment to read What is Huntington's Disease or visit The Huntington's Disease Society of America website and learn a little bit more about Huntington's Disease. To find a cure, we have to educate the world so they can understand. To help friends understand what Robert's family is going through, they have to be educate.  May is Huntington's Disease Awareness month and I want to make everyone aware of why this matters - not only to me and Robert but to the nearly 30,000 in the United States that have been given an HD diagnosis and their families as well. The impact of this disease is felt on so many more than just that those 30,000 that have been diagnosed.