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Spinal Muscular Atrophy
Nirma - SMA III Adult Stem Cell Patient Печать E-mail
Spinal Muscular Atrophy
14.06.2010 13:10
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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."






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Rayanna Seffens - SMA Type II Печать E-mail
Spinal Muscular Atrophy
14.12.2009 16:52
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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.

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Kyle Knopes - SMA Type II Печать E-mail
Spinal Muscular Atrophy
14.12.2009 16:42
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Kyle Knopes

16, USA

Spinal Muscular Atrophy Type 2 (SMA Type II)

Course of Treatment

8 IVs Stem Cell Transplants

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Beike - Justin Печать E-mail
Spinal Muscular Atrophy
24.07.2008 11:10

ИМЯ: Джастин

СТРАНА: Канада

ВОЗРАСТ: 1,5 года

ДИАГНОЗ: Спинальная мышечная атрофия типа 1

 

ПРИЧИНА ОБРАЩЕНИЯ: У Джастина врожденная спинальная мышечная атрофия типа 1, генное заболевание, которое приводит к гибели двигательного нейрона и в результате этого ослаблению мышечного тонуса ребенка. Родители стали подозревать, что с их ребенком что-то не так, когда у него в раннем возрасте стали проявляться первые симптомы заболевания, такие как слабость в ногах и нездоровый «монотонный» плач. Когда Джастину исполнилось семь месяцев, ему поставили диагноз – спинальная мышечная атрофия типа 1. Родители малыша пытались лечить его всеми возможными способами, но так и не смогли остановить развитие болезни. Однажды они увидели информацию о детях с таким же заболеванием, которые прошли курс лечения стволовыми клетками в Китае, и лечение дало видимый эффект.

КУРС ЛЕЧЕНИЯ: Инъекции стволовыми клетками пуповинной крови и факторами роста нервов; реабилитационная терапия.

ДО ЛЕЧЕНИЯ: У Джастина были слабые мышцы. Он не мог сидеть, переворачиваться и поворачивать голову. У него были проблемы с координацией движения ног и рук, он хватал какой-нибудь предмет, но не мог долго удержать его в руках. Он начал говорить и запоминал новые слова, но его голос был слишком слабым.

 

ПОСЛЕ ЛЕЧЕНИЯ: Джастин прошел трех недельный курс лечения стволовыми клетками в Китае. Лечение дало положительный результат. У него произошли заметные улучшения. Его голос стал сильнее и четче, мышцы стали крепче и он достиг контрольных показателей характерных для своего возраста. Его родители боялись, что он всегда будет отставать в развитии. Он может длительное время сидеть и держать голову прямо, правда кто-нибудь все же должен его поддерживать. До лечения если его родители пытались посадить его, Джастин тут же падал вперед. Он стал переворачиваться с бока на спину. У него улучшилась координация рук. Он стал тянуть предметы в рот, как и все дети его возраста. Бал «силы мышц» Джастина увеличился настолько, что он может лежа на спине, держать колени вместе. Родители Джастина рады тем улучшениям, которые у него уже произошли и с нетерпением ждут дальнейших улучшений.


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ALS - Mr. Reynolds
ALS - Ms. Brooks
Ataxia - Mr. Arruda
Ataxia - Mr. Blair
Ataxia - Ms. Crowter
Ataxia - Ms. Graf
Ataxia - Ms. Gray
Ataxia - Ms. Jones
Ataxia - Mr. K. Graf
Ataxia - Mr. Knoblauch
Ataxia - Mr. Martin
Ataxia - Mr. Nate
Ataxia - Mr. P. Flynn
Ataxia - Mr. R. Flynn
Ataxia - Mr. T. Graf
Ataxia - Mr. Wallace
Autism - Mr. Lachlan
Autism - Ms. Maria
Autism - Mr. Pacis
Autism - Mr. Wang
Autism - Mr. Yu
Batten Disease - Mr. Dell'Aringa
Brain Injury - Mr. Anduha
Brain Injury - Mr. Ashton
Brain Injury - Mr. Blazevic
Brain Injury - Mr. Cui
Brain injury - Mr. Hayward
Brain Injury - Ms. McAfee
Brain Injury - Mr. Nguyen
Cerebral Palsy - Mr. Andrew Ricci
Cerebral Palsy - Mr. Bocskai
Cerebral Palsy - Mr. Boles
Cerebral Palsy - Ms. Caprioru
Cerebral Palsy - Ms. Ella
Cerebral Palsy - Mr. Gryphon
Cerebral Palsy - Mr. Lawrence
Cerebral Palsy - Mr. Nicholas
Cerebral Palsy - Ms. Sosa
Cerebral Palsy - Mr. Teskey
Cerebral Palsy - Ms. Tahiliani
Cerebral Palsy - Mr. Phang
Cerebral Palsy - Mr. Will
Epilepsy - Ms. Madura
Epilepsy - Ms. Pinczker
Friedriech's Ataxia - Ms. Maher
Friedriech's Ataxia - Mr. Zachary
Glut1- DS - Ms. Jordan
Heart Disease - Mr. Maxwell
Huntington's - Ms. Arroyo
ION - Mr. Stevens
Muscular Dystrophy - Mr. Russ
MS - Ms. Chen
MS - Mr. Frey
MS - Ms. Glenn
MS - Ms. Helm
MS - Ms. Kay
MS - Mr. Kenneth
MS - Mr. Ozzello
MS - Ms. Sprague
ONH - Ms. Barlett
ONH - Ms. Hallie
ONH - Mr. Justin
ONH - Mr. Lawrence
ONH - Ms. Lilli
ONH - Ms. Manuela
MSA - Mr. Haywood
Parkinson's - Mr. Buckley
Parkinson's - Mr. Brown
Parkinson's - Mr. Budiono
Parkinson's - Ms. Chin
Parkinson's - Mr. Devlin
Parkinson's - Ms. Edwards
Parkinson's - Ms. Kluber
Parkinson's - Ms. Rouen
Parkinson's - Ms. Thomas
Parkinson's - Mr. Woodward
ROP - Shirdesh
ROP - Tatyana
Rett Syndrome - Ms. Laura
SMA - Ms. Gologan
SMA - Mr. Justin
SMA - Ms. Loredana
SMA - Ms. Nicole
SMA - Ms. Nirma
SOD - Claire
SOD - Ms. Frenette
SOD - Ms. Giulia
SOD - Ms. Megan
SOD - Mr. Peterson
Spinal Cord Injury - Mr. Aldrich
Spinal Cord Injury - Mr. Allen
Spinal Cord Injury - Mr. Ben
Spinal Cord Injury - Mr. Carson
Spinal Cord Injury - Mr. Iordache
Spinal Cord Injury - Ms. Jennifer
Spinal Cord Injury - Mr. Maricelli
Spinal Cord Injury - Ms. Pai
Spinal Cord Injury - Ms. Radu
Spinal Cord Injury - Mr. Savage
Spinal Cord Injury - Mr. Zuo
Stroke - Ms. Hollis
Stroke - Ms. Jing
Stroke - Mr. Li
Stroke (Child) - Ms. Farkas
Stroke (Infant) - Ms. Grecsó
Stroke (Infant) - Mr. Hildko