In the video: 5 important things to know about rare diseases in Israel/PR
"I fell into such a deep abyss that I didn't know where it ended,"
Esnat Blumenfeld
(62) opens her words, but already during the rare disease that caused every muscle in her body to break down, until she could not stand on her feet or walk, she learned "that if it were not for these abysses, I would not be discovers the skies".
It happened last July.
Esnat and her family were on a trip abroad, finished another day full of experiences and returned to the hotel in the evening. "That evening," she says, "I felt as if something broke in my body.
I got to the room, lay down on the bed and told my husband that something happened to my body.
I thought I might have caught the flu or corona.
My husband gave me paracetamol and I recovered a bit, but then I tried to get into the bath and couldn't lift my leg.
I thought that maybe it was just weakness from the virus, but in retrospect, it was the first sign that something in my body was wrong."
A few days after they returned to Israel, Asanat's condition worsened. She quickly had tests done, and the results showed significantly severe liver functions. Blumenfeld was rushed to Meir Hospital In Kfar Saba. "In the emergency room, a doctor examined me, who asked me to describe exactly the type of muscle pain I reported.
"There was a stage where I couldn't swallow saliva or open my eyes. Little by little I became like a sack of potatoes."
Osnat Blumenfeld in the hospital/courtesy of the photographers
"I told him that I felt as if I had run a marathon or climbed a high mountain. He did an examination on me and decided to admit me to the internal medicine department, where there is a liver specialist. That night, I was woken up at midnight and told that the results came back and that I had a high CPK level, which means a breakdown of
The
muscle. It turned out to me that my CPK level in the test reached 15,000, when the norm is between zero and
75
"
. Shai Koitei
, director of the rheumatology unit. She underwent countless tests. "There was nothing that was not checked," she says, "and after a process that included comprehensive tests and consultations with leading experts in Israel and the world, Prof. Koitei informed me that I was going into a difficult battle - but I would win ".
And it's blue and white
The device that changes everything you knew about refreshing and firming the facial skin
In collaboration with Premier
Osnat Blumenfeld in the first steps on the road to recovery/courtesy of those photographed
"There was a stage where I couldn't swallow saliva or open my eyes. Little by little I became like a sack of potatoes, when another muscle broke down, followed by another. There was a stage when there was a fear that I would need a ventilator and a probe, because my breathing muscles weren't working."
"There was a stage where I couldn't swallow saliva or open my eyes. I slowly became like a sack of potatoes, when another muscle broke down, followed by another. There was a stage when there was a fear that I would need a ventilator and a probe, because my breathing muscles and swallowing mechanism did not work, which caused a danger Suffocation.
"On one of the occasions when I was in a serious condition, the CPK results skyrocketed and the results of the tests that examined the function of the heart and lungs also came out bad, it was decided that I would do more tests.
I have a ritual where I pray to God and ask for mercy - I believe God listened to me that night.
During one of the tests I did that night, the technician looked at me and saw that I was upset and when the test was over she calmed me down and also whispered in my ear 'Esnet, everything is fine'.
CT scan
which was conducted immediately afterwards showed that my body was functioning properly.
I cheered up"
.
To turn over alone in bed. "I would ride in an ambulance and ask the paramedic to lift me up a little so I could see the people on the street.
I would see the people walking and be a little jealous of them that they manage to stand on their feet and walk - I felt at the bottom."
"My savior, my savior."
Esnat Blumenfeld and her husband Asher/Courtesy of the photographed
Those who were there all along and gave her strength were her family members: her children
Dan, Gal, Lilosh and Asher her husband
whom she calls "my rescuer, my savior".
They consulted with the doctors, researched the issue, handled the bureaucracy and made sure to lie next to her every night and give her strength.
"I remember that Liosh, my eldest daughter said to me, 'Mom - my dream is when I turn 40 - that you celebrate with me'. My family took care of me with great dedication. It is indeed an orphan disease, but it is a disease that a single person cannot survive. You can't do anything alone : Not eating, or going to the bathroom. Sometimes I would ask my husband to lift me a little to stand up because I wanted to feel the floor."
In this abyss, Esnat decided to use the tools she knows from the world of teaching in which she has worked for years.
"I always recommended to my students' parents to use different types of treatment that would strengthen them and do them good. That's why I surrounded myself with therapists, including an emotional therapist, a fear therapist, massages, reflexology, and a sports psychologist. I realized that during the illness, and not after it, I must work on compassion, faith, About the fear and the shame. I internalized the close connection between the body and the soul and a crack of light was revealed to me in the dark reality and then I moved from war to recovery, with the goal to win."
A few weeks after the outbreak of the disease, Prof. Koitei informed her that there was a biological treatment that might help.
"I remember it was Thursday evening and already at the beginning of the week I started the first treatment - my golden heart flower. After two treatments I started to see sparks of improvement" she says.
At first her swallowing system returned to function, then her hands and finally her legs.
"It's a disease that a single person can't survive. You can't do anything by yourself: not eat, or go to the bathroom. Sometimes I would ask my husband to lift me a little to stand up because I wanted to feel the floor."
The improvement began at the same time as the Iron Swords War broke out.
"The improvement in my condition did not happen immediately. I still remember the logistics: putting me in a wheelchair and moving me into the hospital, completely paralyzed.
Then I started to feel the improvement and people asked me how I was doing.
I wanted to say that I feel better, but I did not feel comfortable saying that I feel that I am climbing out of the abyss, at a time when the country is sinking.
But the war put me out of proportion and I'm happy to say that I'm not traumatized by what I went through, but grateful."
Today, five months later, after six treatments, she's doing physical therapy and practicing rehabilitative Pilates. "I'm building a new shelter, separated from the caregiver, the wheelchair, and the disease itself, Returning to a kind of routine that includes traveling to visit the grandchildren in the north, knitting dolls for the children of the Otaf, meetings with friends and more.
Today I feel like a miracle.
It is important for me to say thank you to everyone who surrounded me and especially to the team at Meir who diagnosed my condition quickly and found the right solutions to successfully treat a disease that is so rare.
Thanks to all of these, today I can go and talk about everything I've been through, strengthen others and tell my story."
More on the same topic:
rare diseases
Meir