My Wife’s Family Is Huntington’s Strong
Huntington’s is a strange and deadly disease.
It’s not like cancer. Only 5-10% of cancer is hereditary, and what’s passed down is the abnormal gene that can lead to cancer, not the cancer itself.
It’s not like heart disease. Certain risk factors, such as high cholesterol, can be passed down from parents, but inheriting these doesn’t mean you will die of heart disease.
Knowing about a family history of cancer or heart disease can help with prevention and early diagnosis so that, in the end, it doesn’t kill you.
That’s not so with Huntington’s disease. If it runs in your family, you have to accept the unavoidable truth that you may have it and may have unknowingly passed it down to your children.
It runs in my wife’s family. Jill’s father had it, which means his father had it, as his father’s side carried the gene. It means that his brothers and sisters had a 50% chance of being gene-positive. It means that Jill and all of her cousins could be gene-positive, too.
I never realized how much Huntington’s affected Jill’s family until I accompanied her to the neurologist for the first time. One of the questions was, “Who in your family was diagnosed with Huntington’s?”
She started naming family members. Her great-aunts and -uncles. Her father’s siblings. Her cousins.
At that moment, I realized that no one in her family could avoid Huntington’s disease. There was no way to prevent it from attacking their minds and bodies. They all fall into one of two categories: the ones who inherited the gene, and the ones who feel some level of guilt because they did not.
After leaving the doctor’s office, Jill and I talked about how Huntington’s disease has essentially hurt every person in her family. It has robbed her loved ones of time, peace of mind, and the belief that they will get older and wiser. It has robbed them of the belief that they can protect their children from the same fate.
It all sounds so sad — so much so that most people would crumble under the weight of it all. Most people would have a hard time getting out of bed. But not Jill’s family; they are remarkable.
They all grew up witnessing how Huntington’s affected the generation before them. They saw how their relatives suffered and then died before their time, but they continue to get out of bed every morning. They have jobs and families and continue to love life.
Jill’s family is the strongest group of people I have ever met. They tell Huntington’s disease every day that they won’t let it destroy their lives, even though one day they will possibly die from it.
They are Huntington’s strong.
Huntington’s is a weird disease, but I hope that one day, like cancer and heart disease, they will be able to take medication for it so that it either goes into remission or can be managed, allowing those afflicted to live relatively healthily for many years.
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Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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Comments
Michelle
My family also has HD my mother's side, her father had it along with most of his siblings I mean many of them were struck by the disease. What is strange is this! My grandfather went on to have 7 children! And of them only 2 were diagnosed with HD so far. They are into their 50's and 60's now! And I had them run a test for me and my sister to find out if we had HD. Erica was sure she did and we were sure I did not! My brain scans were all clean etc. So when it came flipped around Erica who has 2 children doesn't have it! I wouldn't have it any other way! I do have it but at 40 (in about 8 more days) I am still symptom free! God is amazing! He gave me more time than I thought I would have. My mom got sick around 35 though we lived in denial for about 10 years in her 45th year she was diagnosed. In 2018 Nov she was surrounded by her family when she passed. She fought long and hard! She never lost faith in God! She never gave up on life!
In 2010 she was on life support because somehow a hole in her diaphragm caused her colon to go into her chest cavity collapsing her lungs. This usually is a high speed accident injury no one knows what happened. She went thru 2 surgeries, it was not something the Dr's thought she'd survive but I knew she would God told me the morning of the first surgery! She ended up very sick after from blood poisoning etc, and for a while did not know who we were! It was hard. She went from the HOspital to Nursing home and we stayed with her 24/7! In July she came home after almost 3 months away! It was a miracle that she survived but she did and she didn't ever give up. She'd make jokes about her Ostomy bag! We even dubbed it "Rose" ... because it smelt like a rose! She'd say and laugh about it.
I love her and I miss her God used her to show me true faith in Him and true courage as well. I pray that if and when this disease takes my body that i will not lose faith in God and that he will use my weakness to show his strength it was worth every day she suffered because at her funeral after hearing the testamonies we all gave one of her nephews got saved! It's amazing how God works. I pray that he will give me courage and strength.
My aunt Arlene is sick and not long for this world, but she isn't giving up hope either. People with this situation are strong for reasons no one can explain. Why not jus tlay around weeping and give up? For me God gives me a reason to go on!
Carlos Briceño
Thank you for such a long message and for all that you shared. I respect and appreciate your faith and am so sorry that your mom had it and died from it. May she rest in peace. It seems like you are open to all the lessons in life that someone with faith learns, and that is a true blessing. I have no doubt that you will be open to many graces from God as you battle HD. Suffering is not easy, but those of us who have faith realize that suffering brings us closer to the Cross and He knows what we are going through because of what He suffered. And, thus, the graces that flow from His love is all we need as this world and our lives go by fast. It's eternity that lasts the longest and always aim to end up there as all our sufferings will be ended, once we are in the arms of God.
Lauren Holder
Great post! :) Lots of love to your family.