Lauren
Patient
Last on 9 months ago
13 points.
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Lauren's Journal

Results 1 - 5
  • May 16, 2009

    Skydiving For HD

    https://www.skydive4free.com/profile/lauren-holder-198/index.php

    I just wanted to let everyone know that  I have started my new fundraiser-skydiving for HD. I have been contacted by the local newspaper--Winston Salem Journal--and they will be doing an article on it and a local news station--WXII--is coming to my house on 05/28 to do an interview. So maybe this will get out there and we'll get some more awareness! :)

    I realize most of you know my story, but some of you don't, so I'm going to share it now.

    I'm 23 years old and I live in NC. At the age of 19 (right before my 20th birthday), I tested positive for Huntington’s Disease. Huntington’s Disease (abbreviated HD), is a genetic neurological disease that causes mood disorders such as aggressive behavior and depression, cognitive issues, speech problems, coordination issues, jerky movements, problems with swallowing, etc. It is kind of a mixture of cancer, muscular dystrophy and Parkinson’s. There is no cure and there is a 50% chance of passing it on to offspring. Children can also get HD, known as juvenile Huntington’s Disease, and symptoms are much worse in them than in adult onset HD. I currently do not have any symptoms (and hopefully I won't for a long time), but my father does and his disease is progressing. He has become quite aggressive and agitated in the past few years. He has balance issues and memory loss. He has movements in his hands and head he can't control. Also, my grandfather passed away in August of 2007 from complications of HD.

    After testing, I have really made it a point to live life to the fullest and I made it my passion to make other people aware of HD and to help other people affected by HD. I'm part of a great group called the National Youth Alliance (or NYA), which is part of the Huntington's Disease Society of America. We're a group of people from ages 9 to 29 all related by HD. Some of us have tested positive, others negative. Some are at risk, some have JHD. All of us have a parent, family member or friend who is affected by HD. The group was started in the hopes of making our generation the last to have HD; to help with awareness and advocacy, to help raise funds to find a cure and to help and support other young people who are affected by HD.

    This year, my big fundraiser is going to be skydiving to raise funds for HD. My goal for this fundraiser is to make it a yearly thing and hopefully have others join me at some point. This year, I want to raise at least $1000. :) But to make this work and successful, I need all of you. If you could donate even $5, I would be ever so grateful. If you don't have the money to spare, then PLEASE let others know what I'm trying to do and ask them to sponsor me--family, friends, neighbors, whoever! ANYTHING you can do to help is greatly appreciated.

    If you would like to donate, just go to the link above or here: https://www.skydive4free.com/profile/lauren-holder-198/index.php

    Please help me find a cure for HD. As I always say, "Be a Healing Hand!" :) And thanks in advance for your support!
    My Grandfather who died from HD and me.
    Healing hand!
    My dad and me when I was born. :)
  • October 25, 2008

    Making memories

    It's really hard sometimes when you're faced with HD to be upbeat and accomplish things you want in life. We tend to ask ourselves, "What's the point?". We give up on dreams and goals we had before getting tested or developing HD. It's like we tend to sabotage our happiness, and I don't know why. I for one don't want to live that way. Yes, finding out you have a disease is scary, HD especially, but why should it stop my life right now?

    I have soooo many things I want to accomplish in life. I want to start my own nonprofit. I want to rescue dogs and help animals. I want children. I want to write another book. I want to sing. I want to skydive. I want to travel. I want to go scuba diving again and go canoing with my husband and camping. I want to learn how to play the flute. I want to get into photography. I want to go on television and tell the world how HD affects people and how they can help. I want to meet Orlando Bloom and Johnny Depp and Michael Buble!! Okay, so the last ones are pretty farfetched, but I still have DREAMS! :)  I want to make a difference in the world. And through it all, I want to capture those memories with videos and photos so I can look back on it and remember.

    One of the greatest things I did for my grandfather in the late stages of HD was creating a photo album for him to remember his life. And I'm sure he did...sure, I had to show it to him more than once, but when he looked at those photos, he lit up. He couldn't communicate very well, though he did give me some answers.

    I want to capture all my memories and later when I have severe symptoms, I can have those times shown to me over and over again so I can see that, even though I had a positive test result for HD, I still lived and loved and dreamed and made a difference, maybe not in everyone's world, but in MY world, in MY life. I didn't stop because I was given a death sentence; heck, I don't even view it as a "death sentence". i view it as something that motivates me to live my life like everyone should be living their lives whether they have a disease or not--time is precious, so don't waste it. I don't know that I would have viewed life like I do now if I hadn't tested. I know I would have taken a lot more for granted and probably would have given up on some dreams. So, in that respect, I see this as a blessing. HD, something so horrible that takes life away, can and will bring me a greater life because, without it, I probably wouldn't have lived life to the fullest.

  • August 18, 2008

    Always in 3's

    It's so funny, when something bad happens to me, everything comes in 3's. I have my kidney stones, which cause a problem all the time. I lost my voice recently, and my thyroid is STILL enlarged and hurts really really bad, and then I got really scared when they told me I could possibly have cervical cancer. All of that was soo much to handle, and again it came in 3's. But somehow the Lord always blesses me with so much more.

    I got such great news today, and it just kept coming and coming!! First, I got a phone call from my doctor and he told me I do not have cancer, I have precancerous cells which will need to be monitored, but it's not cancer!! So that was awesome news, and a huge relief. Then, the job I applied for that is closer to home sent me paperwork to fill out to continue with the process, which really excited me. Then, my husband got a scholarship for his schooling of $12,000, which really helps out financially, AND the military is giving us an additional $200/month starting next month--YAY!!!!! ALL GREAT NEWS. Not only that, but I was really worried about money for the next 2 weeks, and I found out that I received a bonus at my current job this month, which is amazing because I was told I wasn't going to receive one, but I did anyway. AND with my medical bills being so high, I called the hospital billing department and they are going to send me paperwork for financial assistance with my bills. So definitely I've been blessed today and it was more than those 3 things that caused me to be depressed, sad. Things are looking up, and I just need to remember to stop worrying--it'll all work out.

    Wish me luck tomorrow, though, because I am meeting with an ADA specialist to see if I can get any help at work for being sick from losing my voice and my kidney stones.

  • August 14, 2008

    What have we become?


    I have come to the realization that people are just mean and only think of themselves. Has it always been this way? And if so, why is it so hard for me to believe? I guess because I was raised to care about others before myself.

    I call a company and ask for help because I'm having medical and financial issues, and they are unwilling to do anything. My doctor treats me like I'm making up having a kidney stone until she sees for herself on a scan that I'm telling the truth. I drive down the road and a person, only thinking of themselves and not paying attention that cars are coming, opens his car door and steps right in the road! Unbelievable. I really believe people have forgotten others and focus only on themselves. And it makes me sad.

    Now, I realize not everyone is like this, it just seems like lately I've seen more hateful, apathetic people than usual. I know I have a temper, I know I can be mean, but honestly, I always do my best to put others first. Maybe I care too much, but that's just how I was raised. I don't know, I'm just venting...I just wish people would be nicer to others, that more people would think of others first...is that really so hard to do?

  • August 14, 2008

    What have we become?


    I have come to the realization that people are just mean and only think of themselves. Has it always been this way? And if so, why is it so hard for me to believe? I guess because I was raised to care about others before myself.

    I call a company and ask for help because I'm having medical and financial issues, and they are unwilling to do anything. My doctor treats me like I'm making up having a kidney stone until she sees for herself on a scan that I'm telling the truth. I drive down the road and a person, only thinking of themselves and not paying attention that cars are coming, opens his car door and steps right in the road! Unbelievable. I really believe people have forgotten others and focus only on themselves. And it makes me sad.

    Now, I realize not everyone is like this, it just seems like lately I've seen more hateful, apathetic people than usual. I know I have a temper, I know I can be mean, but honestly, I always do my best to put others first. Maybe I care too much, but that's just how I was raised. I don't know, I'm just venting...I just wish people would be nicer to others, that more people would think of others first...is that really so hard to do?