Leah's ALS Story

Leah shares her experience being diagnosed and living with ALS. She also discusses the urgent need for advancements in science that will lead to potential treatments.

[lovemytide]

I was diagnosed with ALS on July 14, 2020 at the age of 54. I was in a clinical trial for 2 years at Mass General Hospital and unfortunately I had to withdraw due to drug complications. Leah, I truly understand your battle, obstacles and sense of urgency. Hopefully the PHENOMENAL neurologists at Mass General learned from me and both of our efforts will move the needle forward. God bless.

[Leah.chi.grace.]

My name is Leah and I’m currently 29. While our stories are respectively different, my dad was diagnosed with ALS just this past week. Your voice and advocacy really inspired me as I’m trying to learn how to become a better ally and supporter for my dad and those living with ALS. Thank you for being~

[tommyfun]

Leah, so sorry you have to go through this. You're a beautiful young woman with beautiful eyes. Saying a special prayer for you. Thanks for sharing. God bless you.

[TrixtyEdits]

I lost my only sister to ALS in 2019. She was only 44 years old, she left behind 5 beautiful children, her husband, and numerous family and friends. I pray a cure is found soon from this horrible/terrible disease

[arirevamped]

Something my mother is going through and it’s so hard seeing her going through it. She can’t speak, eat, but she is still able to walk but she does struggle with balance and has fallen a few times. I just want there to be a cure. It breaks my heart when she cries out of frustration.

[jacquelineortiz]

I love this story. It will be a year that I was diagnosed. I still am mourning my body. I struggle to find my resiliency but am grateful that this story was shared. Thank you.

[karentzv]

I care Leah! I'm so sorry you're facing this. Praying for a cure. You deserve that.

[tag]

“1 in 300” yet it still is labeled as “extremely rare”. This is not a rare disease at all and more awareness needs to be raised!

[teresawalker]

Leah, you are beautiful, well spoken and display strength. We have genetic ALS in my family I have lost 12 loved ones including my grandfather, uncle, mother and brother. I am looking forward to buying your book....and very much praying for a soon cure and eradication of this evil disease! Thank you for sharing your story!

[francine]

I lost my Niece to ALS recently. She was in her early 40s and left behind her husband of 20+ years, and a 10-yr-old daughter. She fought so hard to get NurOwn Mesenchymal ALS Therapy approved which is not a cure, however it could give people with ALS a chance for added time. It breaks my heart knowing that there are drugs out there that might make a difference, however it takes years and incredible amounts of money to get them to begin the trials. NurOwn has been ready for trials for over 10 years and yet no one has had the opportunity to go through the process. If I were given a terminal diagnosis and had the chance to try medications that might extend my life, I would certainly choose that option as opposed to trying nothing. I pray that you get the chance to try whatever medications are available out there. I pray your father can push the research and speed it up. Time is the enemy. God Bless you and your family and may he give you and your family continued strength and comfort.

[rickydalebradford]

I was diagnosed in Nov. 22. I am 56 years old. I had symptoms 2 years before diagnosis. I have lost use of one hand completely and the other is barely usable. I can only walk a few steps with someone helping me. I pray for a cure someday.

[brendaeaster]

This beautiful, intelligent and sensitive young woman deserves a cure before she is 40!

[JoBrew]

Such a cruel disease. My heart goes out to you and I hope and wish for a cure soon.

[aspastacytsatsos]

I lost my dad to ALS 30 years ago. He fought very hard for 7 years. He was 59 when he passed. I hope one day they will find a cure.

[Pumpkinlover-odPu]

Is this women still with us? Bless her

[eddieambriz]

3:04 I see this everyday with my cousin (my sister) and I applaud you guys for staying strong. Thank you for sharing your story and creating a community. We will get through this together. 🙏

[phd]

You're so lucky to have such a wonderful support group. I'm praying for you.

[thefreestylefrEaK]

This is heartbreaking. I hope she is in a better place now. Love and prayers for all dealing with ALS.

Your are so strong Leah, keep fighting and getting the strength from you’re loved ones.

[jamieforler]

I'm 44 years old from Indiana and I was diagnosed with Huntington's disease in 2019. God bless you