A patient’s story of hope for a Huntington’s disease therapy

We’re starting 2013 with a blog entry from Katie Jackson about the UC Davis Huntington Disease Team recently funded by CIRM.

My name is Katie Jackson and seven years ago I had the perfect life. I married the love of my life. We had two beautiful children a little boy and little girl. We both had established careers and bought our first house. I was on top of the world.

That all changed one day when we received a phone call that Mike’s father had died. My husband hadn’t seen his father since he was very young. We learned that Mike’s father had finally lost his long battle with Huntington’s disease. With that call, my husband decided he wanted to be tested to see if he had inherited the fatal gene. With one simple blood draw from our doctor, our lives were about to change forever.

The doctor called and confirmed that Mike had tested positive for Huntington’s. The only word I can use to describe that day is horrific. I fell to the floor and could not get up the whole day. Once I got myself together, I went to the internet and started researching Huntington’s disease. I felt nauseous. Words popped up on my computer: behavioral disturbance, hallucinations, paranoia, psychosis, depression, suicidal thoughts, chorea, dementia, and death. The list went on and on, but I kept reading with tears flowing down my face. Then I read something that brought me into a complete panic attack, each child born to someone with Huntington’s disease has a 50/50 chance of inheriting the mutated gene. That did it, my world had changed. Once a carefree and happy life, now I felt nothing but fear. Not only is my husband going to have to battle through the pain of this horrible disease, but my children have a 50/50 chance of inheriting his same fate.

We went to a neurologist contracted by our health care provider. That was the worst experience I have ever had with a doctor. He literally told my husband, “You have Huntington’s disease, there is nothing I can do for you, and you are going to die.” I saw all hope and life drain from my husband’s eyes. As he put his head down, I put my head up. After I had a few choice words for that neurologist, I left the office and decided it was time for me to be strong; to be strong for my husband; to be strong for my children. I needed to hold this family together. We had two very young children and we couldn’t fall apart.

The second we got to the parking lot, I picked up my phone and called the Huntington’s Disease Society of America (HDSA) Northern California Chapter. I remembered seeing their name popping up while I was searching the internet about Huntington’s disease. The lady on the other end of the line put me on a mailing list, so I would get all the information from the chapter. Then she gave me the single most important information ever, the phone number to the HDSA Center of Excellence at UC Davis.

UC Davis Center of Excellence has done so much for my family. Dr. Wheelock, our neurologist at the clinic, is the most loving caring woman I have ever met. We felt right at home at the very first visit. Dr. Wheelock showed us that she truly cares about all of her patients and the Huntington’s community. Her Nurse Practitioner, Terry Tempkin has given us strength in ways we didn’t think were possible. We are so thankful for Dr. Wheelock, Terry Tempkin, and the wonderful HD team at the clinic.

I felt that even though we found the best team in the world to take care of Mike’s Huntington’s disease, there was still nothing anyone could really do for him; no treatments, no therapies, nothing. I felt so hopeless when it came to my husband’s illness. During the day, I was so busy with work and our children; I didn’t have time to think about Huntington’s disease. When the sun went down and my husband and children went to bed, that was the worst part of my day. My mind would start going crazy about our situation. I would think about how my husband wouldn’t be around the day our children graduated from college or how I would tell my daughter inspirational things on her wedding day that her dad would want her to know, because he wouldn’t be with us. All of these thoughts flooded my mind and tore at my heart. Many nights I would just cry myself to sleep.

One night I picked up my laptop and started typing away. I found myself addicted and 400 pages later I had the skeleton of my first fictional novel “Ferris Wheel”. Instead of thinking of the reality we were living, I was able to escape into a world that I created and could control. It was the best therapy and it was the only thing I found at the time, which helped me cope with the day-to- day, as I watched my husband’s chorea become more obvious. (You can learn more about the book here.)

We were always excited when May came around because we were able to go to the HDSA Northern California Chapters conference. We would get to hear keynote speakers and learn about what was going on with Huntington’s disease. The third conference was the most inspirational one we had ever attended. We heard about this brilliant researcher at UC Davis who was talking about using mesenchymal stem cells (MSC’s) for a potential therapy for people with Huntington’s disease. I sat at the conference that day and listened to this brilliant woman speak. I couldn’t believe what I was hearing, “The possibility of a future therapy in our Huntington’s community using stem cells.” Hearing these words was liberating. I felt the heavy weight of this burden I had been carrying around somewhat ease up a little that day. What I realized was I using my writing as medication for the depression I was suffering through, but now I had something better, something that could make Huntington’s disease a thing of my family’s past. That something was stem cells and HOPE.

The problem I have always been worried about was of course money. We are a smaller disease compared to cancer or heart disease. Where would the money come from to fund the clinical trials? But thanks to Dr. Wheelock at UC Davis, Huntington’s disease was their focus. How fortunate for us that a chance meeting in an elevator brought my two heroes Dr. Wheelock and Dr. Nolta together. It all started in an elevator one day when Dr. Nolta was touring UC Davis Health System to consider directing the soon-to-be Institute for Regenerative Cures. Dr. Wheelock asked Dr. Nolta if she had ever thought about using stem cells for Huntington’s disease. Dr. Nolta knew about Huntington’s disease but had concerns about the blood/brain barrier. Dr. Wheelock invited Dr. Nolta to the clinic to meet some of our Huntington’s families. The rest is history. Since that day, Dr. Nolta found a way to engineer MSC’s for the treatment of Huntington’s disease and together with their teams, they have brought us where we are today, on the way to Phase I human clinical trial for Huntington’s disease.

Many thanks to Dr. Wheelock for advocating for us that day in the elevator, Dr. Nolta for taking us on and for letting us into her brilliant world, Vice Chancellor Dr. Claire Pomeroy and Associate Dean Fred Meyers for supporting our quest for a cure. Huge thanks to Dr. Wheelock’s team at the HD clinic, Terry Tempkin and everyone there for the support and care of our loved ones with Huntington’s and a big, big thanks to Nolta’s HD team at the lab: Geralyn Annett, Gerhard Bauer and everyone over there. Thank you for working so hard in the lab to bring cellular therapy into our lives. We believe in it, we have great hope in it, we need it!

I was at the CIRM meeting the day ICOC voted on the grant in which UC Davis was awarded $18.9 million back in July 2012. I thank CIRM from the bottom of my heart. Without their support and funding, this trial could not happen. Our community knows that without CIRM we would not have this amazing opportunity to make Dr. Wheelock’s Phase I clinical trial a reality. This translates to HOPE for the HD world, so thank you, thank you, CIRM!

One day I was talking to a dear friend who is a powerhouse patient advocate in our community. She had just launched Research4HD.org. We decided to kick off the first fundraiser on Research4HD using the net proceeds of my eBook “Ferris Wheel” to benefit Dr. Jan Nolta’s HD Stem Cell Program. Our goal in this was of course to make a little money for the HD team at UC Davis lab, but we also wanted to show Dr. Nolta we stand behind her and the team. Our community is excited about her work with MSC’s and can’t wait for the Phase I clinical trial to begin. What I am really excited about now is that there is hope for Huntington’s disease. Time is of the essence for all of those who suffer from the debilitating symptoms of Huntington’s disease, but thanks to CIRM we now have HOPE.

Here’s a video of the Huntington Disease patient advocate community supporting the CIRM disease team award to UC Davis:

6 thoughts on “A patient’s story of hope for a Huntington’s disease therapy

  1. This story is similar of my son (who was diagnosed with HD in 2006 at age 36yrs) & his wife. To add to the tragedy, their first born son passed away at age 6 yrs from Juvenile HD. Now, 6 years later from the diagnosis for my son, his wife is his caregiver and mom to twin 8 yr old daughters. To say HD is a devasting disease is an understatement. Thank you for helping to bring awareness to this horrific disease.

  2. Thank you, Katie, for your advocacy on behalf of our families. There are so many of us that have found ourselves on the same boat…a beautiful life with the love of your life, a new home, beautiful children….and then, like for me, the diagnosis of HD that took the father of my children, my youngest daughter, and has left my two remaining children at the late stges of this devastating disease. Let us keep supporting research in hope of an HD free world for those who still have a chance. Blessings.

  3. Thank you Katie for everything you do. You're such a great human being. Your determination inspires all those that learn of your story.

  4. I feel every emotion you described. I am getting in touch with HDSA tomorrow – to gather all of the information I can – and see about the clinical trials available. This disease is scary, and until 2 years ago, I had no clue it existed. Everyday I fight back the tears (when I can), because I’m not sure what’s worse – the unexpected, or the reality of knowing what comes next. Thank you for your heartwarming story…God bless you and your family.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.