Leah's ALS Story

[Music] foreign people who receive an ALS diagnosis in their lifetime which means that every 90 minutes somebody will receive news that they have ALS it can affect anybody any age any race any gender so that's also why it's important for people to care and for us to find treatments quickly Emilia I'm 29 years old and about four years ago I learned that I had ALS I had a great pretty easy childhood I have two younger sisters I spent a lot of time in the swimming pool guided both a normal swimming and a lot of synchronized swimming as well I love to dance I was quite social had a lot of friends I'm at my now husband Hugo who's French and eventually we decided to go back to Paris and so I lived there for a good few years [Music] I started waking up with leg cramps during the night come I would go to yoga in my balance could feel a bit off [Music] I'm Jeff Steven Hagen I'm Leah's dad and uh Chief scientific officer of 3D bio she would call us and say you know I fell again or you know I keep tripping or you know and I think that started uh probably 2000 into 2017-2018 was referred to a neurologist and learned gave me a Tropic lateral sclerosis is a disease that exists and that I likely have it oh she went from having this great life having just started a brand new job in Paris to not really knowing what the future was going to bring I don't even know what ALS was to rethink your hopes and dreams you're told that get up two to five years to live and that just seems absurd you know you're not prepared for that so it's always struggle you know to keep the emotions at Bay I only celebrate my husband's reaction directly of course like for me it was a huge shock really difficult he was very upset in the beginning but from that moment on he was my rock and didn't look back Steve got a roll with the punches and I think I'm fortunate that my family and close ones kind of also have that mentality it's a difficult disease where your Independence is slowly Stripped Away but at the same time your mind remains very strong [Music] so they're only about 10 percent it's got patients that are diagnosed under the age of 40 it is I believe so I don't really see people out there that looked like me [Music] which is tough because disease is so isolating and so I wanted to find another young female face out there having these same issues since I wanted to get involved with advocacy and in doing so I had the opportunity to gather stories of young women who had ALS and through that I started her ALS story today we're over 50 women that are all living with ALS diagnosed under age 35. and it's really really special because a way for us to have a network and so we have the support system to lean into but on top of that it's a way for us to put our voices together and say you know these are our realities and this is why we need better more effective treatments and we don't want to wait I was presented with a book contract to write a book in French about my story learning that I had a lesson adapting and what my life looks like today the book's name is and then that translates to I would like to dance again when you're told you have such a short life expectancy when the disease is so debilitating you have to be able to do something to be proactive against your disease [Music] so for a disease like ALS clinical trials are difficult because you need to have had symptoms for less than two years I was diagnosed and I was already disqualified for clinical trials three months later that's not very long to find those options the fact that my father's a research scientist and he really understands these diseases I've been fortunate to be able to lead on him you know he had the right connections to get me in front of a leading American neurologist I started receiving umbilical cord tea bag cells from a small biotech the hypothesis was never said this would cure me of ALS but rather that it could slow disease progression my current job now in San Francisco we're working towards developing a drug that inhibits the neurodegeneration in a lot of different kinds of diseases something like Gateway labs there's the opportunity to marry the resources of big Pharma and the agility the innovation of Biotech to move things forward faster because I think a big issue is that there is a lack of collaboration between Pharma Laboratories patients biotech and so that's kind of a you're about getting some of the barriers so that there can be better collaboration we as an industry tend to focus on areas we know best areas where we know there are a large population that can benefit from it but when you look at rarer diseases they get less attention because they're hard we've come a long way in in drug development there's still obviously a lot that we don't know in biology and human disease but until we sort of put the effort in we won't be able to get there for me it's really not a question of if one day maybe we'll find treatments for ALS we will but it's a question of when and for me for my friends of her early story we want it to be soon we can't wait decades

Channel: Eli Lilly and Company

Views: 173,687

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Id: 94WKHUK1Dd0

Length: 7min 28sec (448 seconds)

Published: Wed Dec 07 2022