November 25, 2020 8 min read
2020: the year of maladies for all, started off with a bang for us.
For my entire adult life, I’ve been the picture of health. Six foot two, 200 pounds, 8% body fat, heavily muscled – I worked out five times a week. On January 3, after a week of unexplained migraines, blurry vision, stomach cramps and some serious ankle swelling, I went to visit a physician (and friend) on his day off for a quick check. I was sure this was some passing virus or infection that would be easily resolved, like a cold with some weird symptoms. He sent me straight to the ER for chest X-Rays, CAT scans and blood tests, which revealed massively swollen spleen, lesions on my liver and lymph nodes, elevated white blood cells called eosinophils, and ridiculously high blood pressure and cholesterol.
Diagnosis #1: Lymphoma (lymph node cancer)
We were absolutely shocked. The next two months were a blur of hundreds of blood tests, lymph node biopsies, a bone marrow biopsy and urinalysis. Visits to everyone – the oncologist, hematologist, nephrologist and other specialists – but nothing definitive was decided, except that they then ruled out lymphoma. After all that, I thought maybe a curable cancer like lymphoma would be preferable to an unknown specter destroying my body.
Ultimately a visit to a top nephrologist (kidney doctor) at UAB in Birmingham, and a kidney biopsy revealed an even worse diagnosis.
Diagnosis #2: Fibrillary Glomerulonephritis (FGN for short)
FGN is a one in a million ultra-rare kidney disease with no on-label treatment, no cure, and a poor prognosis of 6 months in most individuals until end-stage renal disease. End-stage renal disease means your kidneys don’t work anymore, you need dialysis to live, and without a kidney transplant you will soon die. Lucky me. My young children, my wife, my businesses. Six months or even two years to end-stage kidney failure was simply not an option. So I resolved to do everything and spend as much time as necessary to find a solution.
At about the same time that I was hit with the FGN diagnosis, COVID-19 began to spread. I remember the lockdown vividly in part because I was still traveling to UAB for nephrology and immunology appointments with no one else on the normally packed Interstate 65. I also remember it viscerally because like anyone involved in a retail trade, it was an absolute nightmare for Maho Shades. With retailers around the country closed but still paying rent, our wholesale accounts could not purchase the products they had ordered. In March and April alone, we lost hundreds of thousands of dollars in orders. When it rains, it pours.
In April, an immunologist at UAB diagnosed me with another condition on top of FGN: common variable immunodeficiency, or CVID. Essentially, your body produces five types of immunoglobulins, which is a type of protein that functions as antibodies. My body had an excess of igE (which is related to allergies and fighting parasites), but a massive deficit of igG and igM, which are responsible for fighting viral and bacterial infections. Not a good time to suddenly become immunodeficient during in a global pandemic.
I was told there was no direct scientific link between the FGN and CVID, but given the timing, it was clear that the two were related. I’ve been told the most likely theory is that a virus I contracted, potentially dengue fever when I lived in the Virgin Islands, was responsible for creating an autoimmune response involving the igG4 variant of that molecule, destroying those molecules leading to CVID, and also creating tiny fibrils (like molecular fibers) that ultimately deposit and cause scarring in my kidneys. This autoimmune disease has no name or common set of traits, making it very unlikely that a common set of data and treatments would ever become available.
But the superlative physicians at UAB prescribed two treatments: immunoglobulin infusions for the CVID, and a monoclonal antibody generally used for leukemia and lymphoma called Rituximab for FGN. The IG infusions come from filtered plasma donations, while Rituximab is a cutting edge treatment that makes the body produce a single antibody over and over. In this case, it reprograms the B-cells that are part of your immune system so that they lose the programming instructions that are causing them to attack parts of the body that lead to the autoimmune disease in the first place.
While I was trying to decipher and understand the hopeless complexities of the immune system, life went on…
Maho had hundreds of thousands of dollars of inventory we’d already bought, and several full time employees that relied on the business to put food on the table. So we pivoted to a direct-to-consumer (DTC) model, at least temporarily, and it worked. In May, our online sales skyrocketed by 300% (thanks to people like you). Maho Shades was thriving again. So with this increase, we wanted to pay it forward. We decided to donate our sales to numerous charities as a way to give back to those struggling with unemployment. We also opened a socially-distanced outside store in our renovated Airstream. One of the groups we owe enormous thanks to is the owners of the Flora-Bama beach bar in Perdido Key, Florida, where we set up our Airstream shop from May through September. Please, go buy a bushwhacker from our good friends there when it’s safe to get out and do so.
So the good news, business was back up. Great – I could pivot to my next battle. This time with Blue Cross and Blue Shield. CVID diagnosis and prescription for IG infusions?Who cares? Coverage denied. A prescription for Rituximab, the only treatment with any proven efficacy in treating FGN from the State’s leading nephrologist, who is also the head professor at UAB of nephology?Sorry, that’s denied too. For several months, I worked with physicians and my law partner (I’m also a lawyer) to threaten litigation, and do everything else I could think of to get the medication I needed. I even planned for an extended trip to Mexico, where I could get the medication 90% cheaper. In July, Blue Cross relented and paid for IG infusions. But Rituximab, which is $60,000 per year over the counter, was another story. No matter what approach I took with Blue Cross, the answer was always no. Go die, they implicitly told me.
In the Fall, I had another idea… I wrote the fine folks at Genentech, the makers of Rituximab. They agreed to provide the medicine to treat my FGN for free, no strings attached. I started the treatment in September, and as of today I am feeling 95%% of my former self, and have been able to wean myself off the daily medication that prevents my waist swelling up like an inner tube. I’ve lost 20 pounds of muscle and am still very wary of getting COVID-19 or anything else, but I’ve got one less thing keeping me up at night, so my insomnia is gone. I’m more confident than I have been for most of 2020 that I’ll live to see my kids grow up.
Maho Shades: Our Future is Bright
While it’s been a tumultuous time for my health, Maho has taken another bold step in an uncertain time. The team has worked tirelessly to open our own retail store at the Wharf in Orange Beach. This may seem like a crazy time to dive into retail, with constant warnings of the “retail apocalypse” sounding in the news. But I’m an optimist, and I don’t believe it’s an apocalypse. I believe it’s a revolution. Crisis breeds opportunity.
If you are like me, you’re sick and tired of shopping in soulless corporate big-box stores, where workers are paid minimum wage, mistreated, and don’t have much an incentive to give a flip about the products they sell or the customers they serve. Sunglass and eyewear shoppers have also, by now, figured out that nearly every brand of eyewear: Ray-Ban, Oakley, Costa, Persol, Arnette, Armani, Burberry, Bulgari, Coach, Dolce & Gabana, Chanel, Michael Kors, and on and on, are controlled by a single Italian monopoly: Luxxotica/Essilor. Luxxotica/Essilor also owns Sunglass Hut, Lens Crafters, Pearle Vision, Target Optical, Eyemed Vision Care insurance, Glasses.com, and so many more.
Because of this, near-total market domination has driven up costs, but quality and performance have stagnated for the past thirty years. This was the original impetus for us to start Maho. After one day on St. John (Alex and I lived in the Virgin Islands for some time), we both lost expensive shades in the water in Maho Bay. So we wanted to offer the kind of cool, classic frames we had always worn, but with the high-tech lenses founded in sportfishing frames, at a reasonable price that Luxxotica’s model couldn’t match.
For the past four years, Maho has grown principally by selling to retailers frustrated by Luxxotica’s dominance and terms, but always alongside those products on shelves and racks. But we’ve always known that the best thing we could do to grow our business was in our own stores, where we could treat and pay our employees fairly, dedicate the time to educating customers on the superiority of our product and its value, and begin to truly chip away at Luxxotica’s dominant position. Despite that knowledge, fear of the unknown has always held us back. Fear that we would lose retail accounts we had worked hard to appease. Fear that even though customers loved our product and bought many from our retailer partners, they wouldn’t buy from us. Fear that we wouldn’t know how to run a store… but we’re doing it. And we’re beyond optimistic. Thank you for your support.
Here is the strange message I want someone to takeaway from all this.
I’m thankful for 2020.
Thankful for the health problems it’s thrown my way. Thankful for experiencing the awfulness of Blue Cross, and the generosity of Genentech. Thankful for losing hundreds of thousands and being made to remake our business. Thankful for learning how to improve my law practice through the adversity and challenges of the pandemic. Thankful for the pandemic and hurricanes and fires it’s thrown at all of us. Thankful for those who have shown their kindness and support. Thankful to my wife Alex, our business partner Jordan, the good people of the Flora-Bama and all our vendors in between.
This year has quickly thrown into sharp relief that old cliché that there is no time like the present. To chase our dreams. To make our life better. To focus on what matters. I might die next year, or the next, or 60 years from now. I can’t tell you how freeing that knowledge is. Fear is necessary in that it helps guide us away from unnecessary risks. But it is optimism and hope, for carving out a better future for ourselves, our children, our partners and employees and customers, and everyone else we come into contact with, that should be the primary driver of our decisions. I’ll live for now without regrets because I am going to do my best to live every day like it is my last, because it might be. I’m going to spend as much time with my children as I need. I’m going to be the David that takes down Goliath. I’m going to take the risks that I know are right. And I hope you do too.
And with that, I can’t stress enough… we appreciate your support in all the ways you’ve supported me and the rest of the Maho family. From your purchases, to your comments on social media, and visits to the Airstream to say hello. You give us all the good vibes. We’re thankful for you.
-Kris Anderson, co-founder Maho Shades