The following is a letter from Angie Nutter about our awesome friend and yoga teacher Daniel Gottlieb who needs some love:
My mother used to say to me, “Angie, never judge anyone until you’ve walked a mile in their shoes.” I am humbled as I have just returned after walking one small mile in the endless journey my dear friend Daniel now faces as he fights to regenerate his liver from years of an improper diet which has manifested a full blown case of Wilson’s disease (WD).
My mind raced as he shared the news with me that he had been diagnosed with Wilson’s disease. What was he to expect in his days ahead? How would he be treated? Where would he be treated? But the biggest question in my mind was what exactly is this disease?
WHAT WAS HE TO EXPECT IN HIS DAYS AHEAD?
Cases of Wilson’s disease are extremely rare. Due to this, there are limited medical resources such as clinical trials, doctors and dieticians devoting their expertise to it. This fact scared me. My fears were further ignited when I made a phone call to the only Wilson’s disease non-profit organization earlier this week. It left me utterly disgusted that they only have enough funding to donate $1,000 per family, per lifetime in cases like Daniel’s. This amount of money would cover just 10 days of the medication he has been prescribed and this is after specialists get to a place where they have enough information to prescribe. The initial steps of puzzling together a treatment entail weekly visits to the lab for blood work, ER visits, an MRI, and a biopsy of the liver, all of which need to take place immediately as the first six months of therapy are crucial. All of these things are very costly even with insurance, but devastating without. I knew in my heart that this harsh reality was a call to action.
As a sit at my friend’s beside the reality that he faces is overwhelming. With pleading eyes, I turn to his mother for some explanation. She begins to weep, gesturing for me to step outside of his room. She doesn’t want to upset him by being fragile. Recollecting ourselves, we sit in the den and Daniel’s mother, Arlene tells me how this is “normal” for this stage of his treatment, and everything is going according to plan. The medication he is taking is slowing eradicating the copper from his body. The swelling that I see around his face, stomach, ankles, and feet are all signs that it is working; the body flushes the copper out through fluid.
HOW WILL HE BE TREATED?
Careful monitoring of his vital signs, his weight, his water intake and especially his diet are all part of the job Arlene finds herself doing alone. She tells me he has been steadily gaining ½ a pound each day for the past week. If he has a rapid spike of 5 pounds in a single day, he will need to be rushed to the Emergency Room where he will be hooked up to tubes draining the excess fluid. She tells me how Danny doesn’t like his new role of patient; being under the magnifying glass and often times will protest the validity of the system he finds himself a part of. Arlene explained, “This is the strict regimen that has been clinically tested, it will work if we follow it completely.” As she says this to me, I see in these moments talking with her where he got his insurmountable and unparalleled strength. I am caught by the determination I see in her eyes. If the eyes are the windows to the soul, then I can see where this great soul, Mahatma was born from. He has her eyes.
Daniel was diagnosed with Wilson’s disease when the results of his blood work yielded an abnormal amount of copper in his system. Normally copper levels are around 40. When he was tested in California, his numbers were upwards of 400. By the time he returned back home to Michigan, his Copper Toxicity had almost reached 900. It was determined at that time that he has extreme Cirrhosis of the liver and would need to begin taking medication to help flush the copper out of his system or he could face death. Weekly blood tests will continue to provide the medical community with clues as to whether his treatment is working. The blood that is taken each week is then analyzed to determine a MELD score (Model for End-Stage Liver Disease). The MELD score, as an objective scale of disease severity in patients with Cirrhosis, shows promise as being a useful preoperative predictor of surgical mortality risk. An average person’s MELD score reading is around 4, whereas a person who is diagnosed as “terminal” or needing liver transplantation would have a MELD score in the 20s, when Daniel began treatment, his MELD score was at an 18. As of yesterday, it was down to a 15! This is a good sign that his treatment is working.
I’ve tried wrapping my mind around Cirrhosis. Isn’t that what happens when people drink too much? Daniel NEVER drinks, he teaches yoga for a living. He is a self-professed raw vegan, a holistic ambassador who takes wheat grass shots like a fiend. Have you seen all 6’7” of him balanced upon his forearms in Pincha Mayurasana (Feathered Peacock Pose)? He can hold that pose longer than I ever knew humanly possible. These characteristics do not describe a man with decaying internal organs. How can this be? He did everything right. Right? Well, as time would tell, all of the foods Daniel has been consuming each day for the past decade such as kale, beans, nuts, soy and the one ingredient loved the most by raw vegans the world over, chocolate were high in copper. The culmination of his daily intake of these ingredients all led to the harshest reality to face: his raw vegan lifestyle was killing him. Not only are these foods are all high in copper, but omitting certain protein intensive foods, such as meat and dairy aggravated his liver as he was adding excessive amounts of copper into his body while depleting his body of the necessary zinc and protein essential to the clearing of copper. Copper cannot be released from the body without protein and zinc. Daniel’s case of WD could have remained asymptomatic and undetected for the rest of his life had he been on a diet suited for him.
WHERE WOULD HE BE TREATED?
Time was of the essence, so after a call home to his parents, his mother Arlene insisted upon his immediate return back to Detroit where she knew Doctors at University of Michigan specializing in Wilson’s disease. Her older brother, Daniel’s uncle, also has Wilson’s disease and would have died had he not been given an emergency liver transplant twenty years ago. The staff at the University of Michigan would best know how to help Danny.
But the biggest question in my mind WAS WHAT EXACTLY IS THIS DISEASE? Admittedly, I Wikipedia’d the disease. Here is what is said:
Wilson’s disease or hepatolenticular degeneration is an autosomal recessive genetic disorder in which copper accumulates in tissues; this manifests as neurological or psychiatric symptoms and liver disease. It is treated with medicationthat reduces copper absorption or removes the excess copper from the body, but occasionally aliver transplant is required.
The condition is due to mutations in the Wilson disease protein (ATP7B) gene. A single abnormal copy of the gene is present in 1 in 100 people, who do not develop any symptoms (they arecarriers). If a child inherits the gene from both parents, the child may develop Wilson’s disease. Symptoms usually appear between the ages of 6 and 20 years, but cases in much older people have been described. Wilson’s disease occurs in 1 to 4 per 100,000 people. Wilson’s disease is named after Samuel Alexander Kinnier Wilson(1878–1937), the British neurologist who first described the condition in 1912.
-Wikipedia, December 19, 2011.
That’s the clinical explanation. I would later discover that the reality of Wilson’s disease is that its effects vary significantly from patient to patient, ranging from asymptomatic, to chronic liver disease, and even to neurologic or psychiatric signs. Symptoms typically start in the first decades of life, and the majority of cases occur between five and 35 years, but there are also exceptions. Time is of the essence with catching this early on. Daniel admits that were signs earlier; he was becoming fatigued while he was traveling and teaching in northern California and his ankles had Edema, or swelling, that never seemed to go down. He told me that he did notice water retention in his abdomen that has been steadily growing for months and his face seemed jaundiced at times. “I was stubborn and determined to prove that a raw vegan lifestyle with daily yoga practice was enough,” he told me. It could have been dormant, but all the foods he was eating exacerbated his liver and now he needs to fight for his life to get back to normal levels.
HOW CAN WE HELP YOGA DAN
I am writing because I know Daniel’s friends and the yoga community can help. For the next six months all expenses incurred must be paid out-of-pocket before medical benefits are in place. Due to a “pre-existing condition” of a rare disease, the system requires that amount of time to review his case. The Gottliebs share with me how inflated the bills are for uninsured persons. My mind reels as I begin to extrapolate, Danny has to have lab work done every week. His father shakes his head and says to me, “You know what Angie? I am a parent. I’ll take care of him until I die… This is my son.” I am humbled into silence, it should come as no surprise to me that someone with the heart of a lion like Daniel’s should be the outcome of the two people sitting across the table from me at breakfast this morning.
Please help to show your support to Daniel and his family in his time of personal health crisis. I have a Post Office box that all checks and other donations can be mailed to at:
C/O Angie Nutter
P.O. Box 142
Canton Center, CT 06020
I will keep careful record of who has given what for Daniel (it helps I’m married to a Financial Planner). Additionally, his parents and I are working at putting a living trust in place through Bank of America. The first three months that this Trust is open, anyone can make a deposit directly to the trust at any B of A branch. We are waiting for attorneys to review this case and will notify anyone interested as soon as this has been established.