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Inside the Patient Entrepreneur’s Mind: David Hojah

Managing a chronic illness is challenging, whether it is your own or a loved one’s. Starting and running a business also poses unique challenges. If you struggle with a chronic illness, have started a business, or want to start a business, this blog series can help guide you. “Inside the Patient Entrepreneur’s Mind” offers key insights into chronic disease and mission-driven entrepreneurship by some of the most innovative patient entrepreneurs in the world. 

David Hojah is the Co-Founder & CEO of Loro. 

As a patient entrepreneur, can you describe your personal connection to Multiple Sclerosis and how this experience drove you to innovate the space?

I think my main connection to MS is through my friend and mentor, Jack, who is a scientist from Cornell and CalTech and now lives with the disease. These days, he cannot walk or talk. He is one of my main inspirations for building Loro as well as to help others with similar conditions. I remember discussing with him, how can I help you and how can I help other people? Since I come from a technical background, and he comes from the same, we can speak the same language in terms of translating MS needs into technical solutions. After we came up with the idea for Loro, and once we implemented eye-tracking movement (which I was so excited about in the lab), I came back to Jack with the device and he was so happy. The device enabled him to be more independent, which is my personal motivation: to be able to give others the freedom to do what they want. At that moment, Jack was about to cry and I really felt I was doing something great, not just because I’m close with him, but that I could do something bigger.

What makes Loro unique and how does it meet an unmet need of the MS community?

One of the challenges with MS is they face a lot of symptoms including inability to walk, talk and move their bodies. There is not a lot of technology available to help with these challenges. Loro is unique because by using eye-tracking, we can enable individuals to control and communicate with minimal input. We implement technology to serve the MS community so that they can do more themselves without relying on their caregiver all the time.

Are there any other unmet needs of the MS community that you think take priority in working to address? How are patient entrepreneurs well-suited to meet these needs?

Honestly we haven’t explored this much yet for Loro, but as an AI companion, the device will be able to better understand the patient and their behaviors in the future. I think this will be helpful for how patients manage their diseases and conditions on a daily basis. Tracking behavior and managing and tracking disease progression is equally as important to address. Loro will be able to collect data and help health professionals to advance the management of the disease to hopefully find a cure. Currently there is no 100% cure, so patient entrepreneurs have a better idea of what to prioritize and how to understand symptoms in relation to the progression of the disease in order to develop the best solutions.

Where do you draw your inspiration and motivation from to keep forging ahead as an entrepreneur in the healthcare industry? Is there a particular healthcare innovation that inspires you?

As a kid, I used to play a lot and create and invent new things. Being an innovator is in my DNA and I’ve always had a passion for creating. I’ve been inspired by Stephen Hawking both personally and professionally in how people can use technology even if they are severely handicapped by disease. A lot of companies are doing amazing things to empower people to live better and more freely. On my team, everyone has relatives or friends with conditions like ALS, MS and other severe conditions. We know their pain very well and want to help all of these people. How can we help these people to become actively engaged in society? The answers to this question is our collective goal. Reaching this goal will help to improve society overall by creating more active members of society like designers and engineers. Professionally, we can help empower people on disability to be able to work a job. Personally, we can ease the burden of the patient-caretaker relationship and have patients feel more engaged and like themselves. Our mission is to help people with physical challenges to feel connected to the world.

Lastly, what do you do for fun to manage the stress of running a business as both a person connected to a chronic disease like MS and an entrepreneur? Do you have any similar advice on work-life-disease management balance to others out there thinking of starting a business to meet an unmet need of a chronic disease patient community?

As an entrepreneur, we love to work too much. We are all workaholics. Especially starting something new, you become so addicted and passionate that sometimes you forget to have a personal life. My advice is work to achieve something but stop to take breaks and have fun. For me, that is by practicing yoga and meditation. It has helped me to manage stress, minimize overthinking, and relax within the confines of my own mind and body. I also love art. I draw and paint a lot which has helped my creativity and ability to innovate. One time, I was drawing and found the solution a particular aspect of the business we were stuck on. Loro is constantly running in the back of my mind so when I do something creative, it can spark a positive change somewhere in the business.

Going Digital When You Have MS

ORIGINALLY PUBLISHED ON MS SOCIETY| 07 SEPTEMBER 2018

Technology is so embedded in our everyday lives that I’d challenge anyone to go more than a couple of minutes without using something digital.

 

But what is the future for digital when it comes to helping people with MS? When I was diagnosed ten years ago, I ended up feeling very disengaged from the healthcare system. Now I wonder whether digital solutions could have helped me have a better experience.

How technology helps me with my MS

I use technology for many things relating to my MS and the biggest emphasis is on information and knowledge. When I was diagnosed with MS, I gathered enough literature to fill a bookshelf.

Now, the majority of my information needs are met digitally. I have access to a wider variety of digital information, via the internet, smart devices and patient portals. I’m more informed and can make shared decisions with my healthcare team. The next step is that I want to be able to more easily share my health records with all my doctors, because I’m not just my MS.

CLICK HERE TO FIND OUT HOW TRISHNA USES TECHNOLOGY TO SUPPORT THE MANAGEMENT OF HER MS! 

 

Celgene, Lyfebulb put patient spin on MS innovation challenge

Innovation challenges continue to proliferate in the pharma industry, and Celgene’s is the latest, seeking crowdsourced solutions for multiple sclerosis (MS) patients. Its partnership with Lyfebulb is unique, however, in that it only accepted entries from patients or direct relations of patients.

In the MS challenge with Celgene, Lyfebulb and its Big Biotech partner have narrowed the field to 10 patient entrepreneur finalists, with a “Shark Tank”-style finish set for June 12-13. Each finalist will get 10 minutes to present to a professional panel of judges that will include a patient advocacy group lead, patient ambassador and venture capitalist, plus reps from pharma and the insurance industry. At the end of the second day, one winner will be chosen for the top prize of $25,000. But even more valuable than the money, said Lyfebulb founder and CEO Karin Hehenberger, is the exposure to pharma executives, additional funding sources and other influential industry players.

Celgene first approached Lyfebulb last year in an effort to better understand MS patient needs as it readied its first multiple sclerosis treatment for market. Since then, the FDA has pushed back on Celgene’s candidate ozanimod with a refuse-to-file notice and a request more data on preclinical and clinical pharmacology, delaying the company’s NDA filing until March of this year. The new ozanimod data hit its targets, though, and analysts project the drug could still reach $2 billion in sales in the already competitive oral MS drug market. In the meantime, Celgene has also become an M&A partner for Bristol-Myers Squibb in a $74 billion deal approved by shareholders in April.

The Celgene challenge for multiple sclerosis is Lyfebulb’s seventh patient-sourced contest, with previous partners including Novo Nordisk for diabetes, Helsinn Healthcare for oncology and United Healthcare for depression and anxiety solutions.

Hehenberger, a physician and Type 1 diabetes patient who has walked the walk of chronic disease with two transplants and a pacemaker implant, launched the company in 2014 to help give patients a voice in industry solutions.

“We believe insights and solutions from patients can be leveraged by pharma and by tech and device companies to enhance their pipelines, to get closer to patients and to learn what it’s like to live with these diseases,” she said. “For the patients, they finally really get heard. For pharma companies, instead of just being patient-centric, they now work side by side with patients.”

Tuesday, May 21, 2019

Source: Beth Snyder Bulik, FiercePharma

5 Hacks that Help Me Manage MS Fatigue

Article By: Lyfebulb Ambassador Trishna Bharadia

Originally published on Life Effects by Teva  | 07 February 2019

Fatigue has been the one MS symptom that has been a constant for me from the point of diagnosis. It’s not that unusual, since fatigue is one of the most common symptoms of MS which means I know that I’m not alone in experiencing it.

What can make it harder to cope with though is that people experience fatigue in different ways. So just like there’s no “one size fits all” method of managing your MS in general, the same can go for fatigue.

When I try to describe fatigue to my friends I say it’s like “walking through quicksand with boots filled with water whilst experiencing the world’s worst hangover.” Fatigue hits me in two ways – physically and mentally. Physically my entire body slows down, to the point where every movement feels like a monumental effort. Mentally, I’m overtaken by a thick fog and just putting a single sentence together becomes a full-on workout for my brain.

People who don’t experience this often misunderstand the severity, so people – even well-meaning ones – sometimes have frustrating responses. I’ve made a list of the things people say about fatigue that I really wish they wouldn’t.

5 things not to say to someone with MS fatigue

Fatigue isn’t like regular tiredness. It can be completely arbitrary and disproportionate to your activity levels. Plus, it feels different; I can quite easily tell the difference between regular tiredness and MS fatigue.

Sleep doesn’t always help. In fact, a lot of the time a nap is no more than a sticking plaster. Even if it might make me feel better for a few hours, very quickly I’ll be back to square one. It’s like never being able to fully recharge the battery on your phone.

Seriously?! I would love to be able to do everything that I want to do, when I wanted to do it. When I think about having a “lazy day” it often involves watching a movie, eating ice-cream, reading a book or chatting on the phone with a friend. When fatigue hits, even doing those things uses too much energy.

Everyone with MS is different and can experience different sets of symptoms. While fatigue is common, not everyone experiences it. People also have different coping mechanisms depending on how fatigue affects them. So it might not always be obvious if someone is experiencing it, if they’ve been able to manage it effectively.

The way an individual views each of their MS symptoms is personal. Someone I know with MS once told me that for them, losing their ability to walk properly and having to use a wheelchair was by far the lesser of the two evils when compared with his debilitating fatigue. For someone else, the opposite might be true. So, if you’ve never experienced it, don’t make a judgement on it.

Things I wish people would say when I experience fatigue

If you do know someone who is experiencing fatigue and you’re wondering what you could say or do for them to offer solidarity and support, I have listed three of the most important things that I would find useful:

I dread getting invitations and having to turn them down because the place is too far, the timing isn’t right, or I feel like I can’t cancel at the last minute if I’m having a bad fatigue day. Being able to do things closer to home and at times when I know my energy levels are likely to be at their best can make things easier when planning social occasions. And being understanding if I have to cancel at the last minute also goes a long way. I wouldn’t cancel unless I really had to and I’ll already be feeling rubbish because I know I’m going to miss out.

Offering a lift, picking up some shopping and suggesting an alternative if we’ve had to cancel plans are all things that can make things easier. I was at a wedding this summer and it was going to be an all day/late night event. The couple whose wedding it was offered me use of their hotel room during the day to be able to rest if I needed to, because I’d told them I might not be able to stay the whole time. Knowing that there was an option to rest if I needed to, meant that I could relax and enjoy the day much more. But please, don’t assume you know what will help – just ask me!

When fatigue hits I feel rubbish. I feel frustrated. And my mood completely dips. Something as small as receiving a nice text message from someone, making exciting plans for a future date, or doing something that will make me laugh or smile just helps to lift my mood. It won’t cure the fatigue but at least my mood might improve!

Hacks to help you manage your MS fatigue

There are no real hacks to cure fatigue, there are just ways to try and manage it. I’ve had MS for ten years now and fatigue was one of my first symptoms – I’d been experiencing it for quite a while even before my diagnosis. I can’t actually remember what it’s like to feel 100% full of energy anymore! But over the years I’ve learnt what works for me and what can help to optimise my “battery levels.”

I make lists. Lots of them. I prioritise. I schedule. I keep an appointments diary for EVERYTHING. I colour code. I cross-off and tick. Writing things down not only helps me to remember things when my brain gets foggy, it helps me to see very clearly what the most important things are, and which things are going to need the most physical and/or mental energy. I can then do those things when I know my energy levels will be at an optimum and do the “easier” or “lesser” tasks when my battery is running lower. This also helps me to pace myself – if I know I have a particularly busy day scheduled, I’ll make sure that the following day is more relaxed.

I find that waking up at around the same time (even on weekends), eating my meals at around the same time, and having a regular bedtime routine can really help my body to know what’s happening and when. This can also help with other symptoms that can exacerbate fatigue, such as bladder issues. So not drinking too much before I go to bed means I’m less likely to have disturbed sleep due to getting up to use the bathroom in the middle of the night.

It sounds counter-intuitive but regular exercise actually makes me feel better. Muscles which aren’t used regularly become weaker, which means that more energy is needed to carry out general tasks. This makes fatigue worse. Exercising regularly will keep my body in as good a shape as possible. I’ll adjust what type of exercise I do depending on my energy levels. I love dancing, and that’s something I’m able to adapt if I’m having a “bad energy” day. Otherwise, a gentle walk or stretching and muscle strengthening exercises are just as good. Exercise also helps me to sleep better and feel good about myself.

This has been really hard for me. I’ve always been very independent and I like to do things myself. However, I’ve learned that accepting help often means that I can get more done or enjoy things more because I’m conserving precious energy. I have a few people who are close to me who I know I can really rely on for support. They understand me and my fatigue and I know I can call upon them if necessary.

In time, I’ve learned to accept things more, deal with the frustration of living with fatigue (even though it’s still annoying!) and develop alternative interests that fit around the ups and downs of my energy levels. I now enjoy being at home just as much as being out. I’ve learned to enjoy my own company, so when I do have to stay at home I’m not as sad about it.

Most of all, I’ve learned to be kinder to myself. If I can’t get something done, I just let it go.

UK/MED/19/0001 January 2019

No Tiara Today

I couldn’t get out of bed today but I did. I couldn’t walk on the treadmill but I did. Not because I wanted to but because I needed to push as much as I could.  I did however get in the shower but I could not get dressed without tears of pain. Screaming for my husband to help me my body was frozen in such pain, legs numb and tingling, eyes blurred and hurting. It took thought to make my legs move, it was like my brain was not reaching them. He helped me to the couch slowly each step so excruciating my tears were uncontrollable. His eyes filled up with tears and fear. He gently helps me to the couch wincing as he does- scared he will make it worse. I lay there not because I am lazy but because I can not do anything else. I moved slow throughout the day each step hurts as my foot hits the floor, I can not feel it but the pins and needles remind me it is there. My face tingles to my lips causing me to feel like I am going mad, maybe today I am. The right side is not only numb but tingling so much. My right eye is blurry and aching, I am having floaters all day. The spasms in my leg jerk my body which makes my back pain sting. By the end of the day I am dragging my right leg and needing assistance walking even ten steps. I notice my clothes are on inside out but at least I am dressed. The kids make dinner and the worry sets in their faces. When mom can’t cook she is hurting in a way that scares them.

I work pushing through the pain. Laughing and trying to stay focused yet each breath is a reminder of the hurt while my legs are numb no matter how I sit. Work, pain repeat until I can not take it any more. I must sleep, laying down finding a spot that is not too awful I crash hard to the sound of kids playing, lawn mowers, birds things that usually keep me awake. Not today the pain, numbness, the tingling is overwhelming.  My eye aching and the blurred vision was too much to take today.  Is this how summer is supposed to be, where is my tan? Pain is exhausting, real exhaustion. I was a true spoonie today!

Just because I do not look sick does not mean anything. The pain is so real and intense I wonder why others can not see it. This is not a pity party; this is not searching for sympathy. This is nothing more than the reality of a relapse with MS. This is a day that I may seem fine on the outside yet inside my body it twisted in pain. Today there was no tiara.

Close-up photo of the silver diadem with diamonds on a blue water background. Shallow depth of field added by macro lens for natural view
Close-up photo of the silver diadem with diamonds on a blue water background. Shallow depth of field added by macro lens for natural view

Lady with MS

My two year MS anniversary

This was post republished with permission on Lyfeblog on DATE.

Two years ago I could not have foreseen what MS would bring to my life. And no, I am not deluding myself with mindless positivity. I despise MS, although I have grown used to it. My surprise stems from the fact that I am a much happier person now than I was before my diagnosis.

I have received such support. And I know who loves me. That is not a childish comment – I mean that I have learned a hard life lesson, and I now value it as such. Some people stick around, some don’t. And some people… Well, I don’t want them to stick around. I realised who I love when I think about who I want to visit me at my worst in hospital. Old friends have returned, and new ones have walked in the metaphorical door.

I am a better person (that sounds trite, but it also happens to be true). More compassionate, more empathetic, and with a far greater tolerance for people who are struggling. I have turned into an advocate.

But I also have stricter boundaries. I have no patience with incompetence, shallowness, lateness or half-truths. Those who know me in person know I was never great in this regard… But now I just don’t care. I may be in hospital tomorrow (or tonight, it has happened that way), and I no longer choose to spend my time with people who waste it.

I have something of a prejudice against lifestyle diseases… If you have your health, for God’s sake make the choice to look after it.

And I know for a fact that it is possible to know more about MS than the doctor or nurse you happen to be speaking to – even in a country with a decent health system like Australia. I have corrected doctors and negotiated with them. And I admit, I have shouted at them. I have no doubt I will do all three again.

I settled into some hardcore medication, albeit with the occasional hiccup (note to self: forgetting to take the tablet for 24 hours is a bad idea).

I experience MS pain in my hands and major joints. There is no rhyme or reason to it, no cause and no cure. It is horrendous. I lose hours when it happens, which tends to be in the early to late morning. I can’t predict it, I can’t stop it, and I sure as Hell just can’t take a handful of Ibuprofen and work through it (trust me, I’ve tried). When it happens, it is debilitating.

I changed my diet. I am largely processed food free. It sucks. But it also rocks: I am quite a bit lighter and my skin has never looked so good. I hope to Hell it helps the MS too.

I failed to exercise… And I don’t have an excuse. My neurologist laughed at my ‘I do incidental exercise’ approach.

But I do have an extremely high tolerance for risk. MS gives me complete uncertainty… So I find myself willing to take my chances on things I probably shouldn’t.

I am persona non grata with the financial powers that be. Insurance agencies won’t touch me, even with a risk premium. Aside, of course, to provide me with Death Cover (which I now have). Technically, I am eligible for the NDIS when it rolls out, meaning the Commonwealth Government classifies me as disabled. But I am not eligible for any disability benefits from the State or Commonwealth Governments… Go figure. I have a decade of professional public policy experience and I can’t figure the rules out. But consider it a lesson learned: go get your income protection and life insurance now, don’t wait for whatever magical date you have in your head (I was waiting to draw down my mortgage and roll it all up together).

I now have a will and three different types of Power of Attorney. Yes, there are three types – medical, financial and guardianship. Go get them. Seriously. Once you take the time to think though the ramifications of not having one (and yes, people like you sometimes need them), it isn’t so hard.

I quit my career. They say most people with MS stop working within ten years. I skewed the average: I walked out in less than a year. But I am building a new one. Writing, advocacy, storytelling. And damn, it feels good.

I have a partner, who I met me after my diagnosis. Two months after, when I was still recovering from my first episode and the methyl prednisolone that knocked me around for weeks. I shudder to think at how I looked and acted when he first met me. Looking back, I realise how sick I was. I used to grow tired just leaving the couch at that point. But he saw through the sickness, and I am forever grateful.

And finally, while it has nothing to do with MS, a quirk of fate has made me a de facto grandmother in an ever-expanding American family at the age of 34. Who knew.

Anything can – and does – happen.

I am not Cancer, I am MS

I am taking off my Stupid Dumb Breast Cancer tiara to talk about something I hate admitting. I guess starting at the beginning in a condensed form is how it should be done. After being diagnosed with cancer all this other crap kept happening. Numbness all down my right side was just the start then my ear popped and I lost hearing all to be topped with my right eye feeling glassy and blurry. I went to an ENT who let me add tried to send me to an MRI with tissue expanders in, UMMMM really? They told me “You have TMJ – be a good patient and take your muscle relaxer. You are under stress.” No, a sorry lady that was rude, and I do not feel right, it was not just TMJ. I kept falling down because my leg felt “dead,” I felt pins and needles in my body, and my hand was just not working. My migraines increased so it was time to see a neurologist. After many MRI’s and tests, he had a verdict. No, it was not TMJ and I listened as he called the ENT and told her just what he thought of her DX, I really liked this doctor. He explained that my optic nerve was depleting and that I had signs of Optic Neuritis. Come again? I just had cancer can I please not add to it. The reality is that this was a sign of early onset MS, multiple sclerosis. I really did not want to admit this, nor did my husband. But as I watch my body and feel the pain it is clear. I did my research and it seems that breast cancer in some brings MS and other autoimmune diseases to the surface, and in others who already had these it makes them dormant. So my love of high heels and stilettos is now given to my cousin. The pain in my feet is too much to bear in regular shoes let alone 6-inch beauties.

The thing with MS some days are ok, not pain-free but doable. Then there are the days that every step can bring tears to your eyes. That laying in bed you feel every pin, every needle, every muscle ache; sleeping becomes a dream. My back has started to feel a weakening of my spine which probably means that the lesions are now in my spine. Of course, this could be cancer who knows! I will be having an MRI to check but I put it off. Not just because they give me panic attacks, but the reality of the results is something I do not want to know. See my best friend from childhood has MS she was diagnosed a year before me so she is who I lean on-just not the right side as that is her bad side too.

I have found that eating right is as critical to my health as the medicine. Exercising when I can is part of my mental health. The issue here is that when you can not feel your feet yet it is painful to take steps, it makes it so hard. Sometimes the pain is so intense that I think others can see it. I was talking to my friend about how I keep feeling like my back is giving out and I almost fall. She told me to get a cane, I lovingly told her to F#$K Off, I said it in my sweetest voice. Truth is that will be my life soon, that and moving the laundry room upstairs. When and how did I become 89??

Gone are the days of 2-hour workouts between the lymphedema and the MS I get about 45 minutes a day if I am lucky. Gone are the superfly stilettos, they are not worth the pain. Gone are the long nights out, my nerves and body can not take it. I have never been one to say my illness has taught me something, but this has opened my eyes. When people complain of their controllable illness or a cold I say “but that can change.” They can not possibly understand what it is like to wake every day in pain knowing that it will not go away and that it will only get worse. Someday MS will debilitate me to the point that I am in a wheelchair, it could happen tomorrow or in 2 years or 10 years that is what sucks about MS you never know when you will flare up or be “ok.”

Living with a chronic illness brings on physical pain for sure but the mental pain is what I have been coping with lately. Not the “why me” but the “I cannot believe this is happening” and how do you explain this to others who laugh when you fall or say “yeah my feet cramp and fall asleep too just rub them.” You can never understand the pain that is unseen unless you have been there and I would never want anyone to feel this.

Life can change in an instance or over time. It does not matter but dealing with the change can be the challenge. There is no control over my illness and there is no way to know if it will progress faster than it is. But I am controlling how I react to this! I will not lie in bed and ache, I will push through each day pain or until the control is gone. And then I will take in that next change and make it my own. Is there anything else I can do? I mean at least it does not affect my tiara!

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