" Every month she got fifteen seizures or twenty seizures in one day, big seizures, and she was always full of medicines, and she was very bad always. After the treatment she stopped having seizures. It was only one time. The one day it was fifteen, but she didn’t have it anymore. "
Spinal Muscular Atrophy (SMA) is a disease which is characterized by the degeneration of the motor neurons leading to muscle weakness and atrophy. In Nirma's case, her parent's started to notice weakness in early childhood. She explains, "Kids are always doing that jumping thing. And climbing and running in the playground yard. My parents saw me, If other kids were doing a high jump, from wheel to wheel, I could just do a little jump."
As she grew older, her condition continued to worsen, but her parents could not find a reliable diagnosis. Throughout her childhood, doctors thought she had various conditions ranging from post polio to Duchenne Muscular Dystrophy. Finally when she was 19, she was able to have a muscle biopsy procedure which correctly diagnosed her condition as SMA III.
Immediately before she came to China for stem cell treatment, Nirma's condition had worsened to the point where she was often confined to a wheel chair, though she could still walk short distances. Her overall strength was very low and she was easily fatigued. For instance, she would become short of breath if she had to talk for an extended length of time.
She began researching stem cells when she heard that a friend of hers had taken their daughter for stem cell treatment in Singapore. After looking at many different clinics, she decided that coming to china was the best because, "Here you have 30 days of treatment and 6 injections, with physical therapy, acupuncture, and other therapies. At the other clinics you come and you get the injection, you stay in the hospital 2 or 3 days and then you go home."
Treatment in China
Nirma recieved 6 umbilical cord blood stem cell injections along with physical therapy, occupational therapy, electric wave therapy, and acupuncture.
Condition after Treatment
Nirma began to see improvement soon after she started receiving stem cells. One of the first things she noticed was that her neck became stronger. She explains, "The first thing I realized after receiving the stem cells was that my neck muscles became stronger. Before I felt like it was very weak there and I felt like I wanted to lean my head back all the time, and it was very tired. Now, no more, I can just sit straight without feeling any weakness in my neck."
Her arm and trunk strength improved as well. She was able to roll better and lift her hands above her head for a longer amount of time. She also gained more control over her bowl movements, which in the last few years had become a problem for her.
But for Nirma, the most important change was that she had gained lung strength, "Before stem cells, when I talk like this [for over 30 minutes], I would definitely get short of breath. I would start to breathe very heavily. But now, no. For me this is the biggest improvement. And it is very important for me, because like I said, for most of us with SMA, we end up with breathing failure and die. But this improvement in my lungs will of course reduce the risk of this breathing failure."
The experience of coming to China is now a big factor in Nirma's outlook on life, "By receiving stem cells at least I see improvement and I see that someday I will get better the way I want. I don't mean I want to be 100% normal again. I know god can do anything, but I want to make it realistic. At least I can do something, things which I never thought I would be able to do. It makes me happy, and if you become happier it somehow improves your quality of life in indescribable ways."
We'd like to thank Ronda Seffens for providing StemCellsChina with this Patient Experience.
Reason for Coming for Treatment
Rayanna suffers from a genetic neuro-muscular disease named Spinal
Muscular Atrophy Type 2. This is a devastating disease where she is
only expected to live between the ages of 15 and 30. Each case is so
different that it is hard to give a closer time frame. Spinal Muscular
Atrophy is a progressive disease, where the motor axons die, so the
muscles in her body will not get the signal from the brain to move.
She will eventually lose the ability to breathe on her own and muscles
used to swallow are effected. There is currently no treatment in the US to slow
the progression of SMA. The reason for the stem cell treatment is to
possibly slow the progression of the disease.
TARA: Canada Varsta: 1 an si jumatate DIAGNOSTIC: Atrofie Musculara Spinala - Tip 1 MOTIVUL VENIRII PENTRU TRATAMENT: Justin s-a nascut cu Atrofie Musculara Spinala - Tip 1, o tulburare genetica, care provoaca moartea neuronului motor, si, ulterior slabiciune, in muschii copilului. Parintii lui Justin au stiut ca ceva nu era in regula atunci cand Justin a inceput sa manifeste unele dintre simptomele acestei boli - cum ar fi slabiciunea membrelor si un plans foarte slab - de la o varsta frageda. El a fost diagnosticat cu SMA1 la aproximativ 7 luni. Parintii lui au cautat diferite tratamente pentru el, dar nu au putut gasi nici unul care sa-i incetineasca progresia bolii. In timp ce cautau mai multe informatii, au descoperit ca mai multi copii cu SMA1 au fost tratati cu celulele stem din China si au avut imbunatatiri semnificative. TRATAMENT: Implanturi cu celule stem (prelevate din cordonul ombilical) si perfuzii cu factori de crestere a nervilor, plus recuperare medicala.
