Bernadette is an independent documentary film about a young woman with Charcot Marie Tooth syndrome (CMT), an increasingly debilitating disease that affects 2.6 million people globally (1 in every 2,500). Doctors know very little about this hereditary neuropathy often treating the symptoms in confusion. The genetic disease is passed from parent to child with a 50 percent chance the child will have it. At once thought to be passed only through the male line, females inherit CMT and it can advance rapidly or progress very slowly, sometimes counter to the parent’s disease parameters. CMT can be fatal.
Those affected by CMT often keep the condition hidden, discussing it little as they watch their hands and feet slowly atrophy until they are cramped and useless. Because there has been little advocacy and little money raised to research the disease, there is no known cure. Surgery isn’t effective and often exacerbates the condition. It was not until Bernadette Scarduzio (her father named her after St. Bernadette) made a commitment, with the help of family and friends, to come out about her CMT. Because of Bernadette’s and others’ efforts, CMT is now gaining wider understanding.
As we follow Bernadette from the time she received surgeries in 2006 to the present when she became the noted “face of CMT,” we are aware of her race against time and her effort to maintain the function in her limbs which is degenerating. Though Bernadette began to manifest symptoms in her teens and is in her 20s, the disease in her body is the more rapidly advancing type.
Filmmaker Joseph Taub documents Bernadette’s life with various clips from family archives, using voiceovers to relate the manifestations of the disease and Bernadette’s response. Also included are vignettes of her Dad who had a milder form of CMT and her mom who has been a stalwart supporter of husband and children; Bernadette’s brother has a milder form of CMT.
Taub realistically shows us Bernadette after she undergoes another surgery, (she’s had many surgeries to date). We understand the family’s and the doctor’s hope that the hand surgery will relieve Bernadette’s severe cramping, inability to grasp, and inability to easily flex and straighten her fingers in a simple movement.
Taub highlights her routines with the physical therapists, massage therapist and others, and we are struck by her solid resolve to thrive and live as normal a life as possible with her partner. She is able to still drive, but as the nerves atrophy and lose their spark, then the muscles atrophy. As her physical therapist states: “When the nerves stop working, the muscles stop working.” That is why Bernadette must continually move, work out, do 110% to “keep on keeping on,” working thorough depression, tiredness (a disease symptom), and the urge to just stay in bed.
Her days are spent hard at PT and any physical exercise she can do to attempt to maintain the use of her muscles, and keep the nerves firing. However, during the course of the film, Bernadette’s condition deteriorates and by the end she is using an adaptive scooter as it becomes harder for her to walk and dress herself, activities we take for granted.
In the last half of the film, Bernadette’s Dad dies from a heart attack and after a season, family and friends come together and pay for an incredible trip to Lourdes, France place of miracles to visit Bernadette’s namesake in the grotto/cave where the humble peasant girl received a miracle. Taub pans shots of the evening pilgrimage of the adherents with lighted candles in an incredible vision of faith and song. In the daytime, we watch Bernadette and friends arrive at the grotto to give thanks and reaffirm their great faith and strength for Bernadette’s call to arms in spearheading a movement to educate, fund-raise and bring global awareness about a condition that has too long been in the dark.[amazon template=iframe image&chan=default&asin=B00F91FMLW]Thanks to Bernadette, CMT is in the light. With her advocacy, sense of community, commitment and fund raising efforts with the efforts of others, one hopes that it will only be a matter of time before a cure for CMT is discovered.
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