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Spinal Muscular Atrophy
Nirma - SMA III Adult Stem Cell Patient Drucken E-Mail
Spinal Muscular Atrophy
Montag, 14. Juni 2010 um 13:10 Uhr
There are no translations available.

Nirma Lestari


30, Indonesia

Spinal Muscular Atrophy Type III

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Medical History


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."






Zuletzt aktualisiert am Montag, 14. Juni 2010 um 15:59 Uhr
 
Rayanna Seffens - SMA Type II Drucken E-Mail
Spinal Muscular Atrophy
Montag, 14. Dezember 2009 um 16:52 Uhr
There are no translations available.

Rayanna Seffens

Age 3, USA

Spinal Muscular Atrophy Type 2

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.

Zuletzt aktualisiert am Donnerstag, 17. Dezember 2009 um 17:12 Uhr
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Kyle Knopes - SMA Type II Drucken E-Mail
Spinal Muscular Atrophy
Montag, 14. Dezember 2009 um 16:42 Uhr
There are no translations available.

Kyle Knopes

16, USA

Spinal Muscular Atrophy Type 2 (SMA Type II)

Course of Treatment

8 IVs Stem Cell Transplants

Zuletzt aktualisiert am Samstag, 09. Januar 2010 um 17:20 Uhr
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Beike - Justin Drucken E-Mail
Spinal Muscular Atrophy
Donnerstag, 24. Juli 2008 um 11:10 Uhr

PATIENTENBERICHT – SPINALE MUSKELATROPHIE


NAME: Justin

LAND: Kanada

ALTER: 1 ½ Jahre

DIAGOSE: Spinale Muskelatrophie, Typ 1

BEHANDLUNGSGRUND: Justin wurde mit spinaler Muskelatrophie Typ 1 geboren, einer Erbkrankheit welche zum Absterben von Motorneuronen führt und dementsprechend die Abschwächung der Muskulatur des Kindes verursacht. Justins Eltern wussten, dass etwas mit ihm nicht in Ordnung war als er einige Symptome der Krankheit zeigte, wie Schwäche in den Extremitäten und ein schwaches Schreien im jungen Alter. Er wurde mit SMA1 diagnostiziert als er rund sieben Monate alt war. Seine Eltern suchten nach verschiedenen Therapien für ihn, aber sie konnten keine finden, die das Fortschreiten der Krankheit verlangsamen konnte. Als sie nach mehr Informationen suchten fanden sie heraus, dass mehrere Kinder mit SMA1 mit Stammzellen in China behandelt wurden und erhebliche Verbesserungen erlebt hatten.

BEHANDLUNG: Injektionen von Nabelschnurstammzellen und Nervenwachstumsfaktor und Rehabilitationstherapie
Zuletzt aktualisiert am Mittwoch, 29. April 2009 um 03:44 Uhr
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