Spinal Muscular Atrophy Indonesia
Blog ini adalah informasi ringan Spinal Muscular Atrophy. Mudah-mudahan berguna bagi pembaca yang budiman yang ingin mengetahui tentang penyakit ini. Qinthara Maharani Audrina, anak kami yang tercinta penderita SMA type 2, anak kami cerdas dan pandai mewarnai, salah satunya karyanya adalah gambar ini.
Kamis, 02 Juni 2011
Hasil Mewarnai Qintha di lelang untuk amal di Wheels to Heal
ACARA "Wheels to Heal" di halaman Pacific Place Mall Jakarta, dihadiri lebih dari dua ribu orang. Acara tersebut diadakan Yayasan Maria Monique Ritz Charlton dan JW Mariot. Empat buah hasil mewarnai Qinthara dilelang, hasilnya disumbangkan ke Yayasan Maria Monique.
Maaf baru update blog lagi
Selain itu juga karena kesibukan lain belum bisa update.
Salam,
Admin smaindonesia.blogspot
Minggu, 26 Oktober 2008
Biaya stem cell treatment di Beike Biotech Dec 2008
The following prices are valid from September 15th 2008 to December 15th 2008.
Please Note: Prices for treatments in China are reviewed on a quarterly basis and are therefore subject to change.
Previously quoted prices do not apply.
Basic treatment program:
The choice of how many SCT’s to have is ultimately up to the client but we do advise that you follow the recommendations of your medical consultant.
> 4 SCT’s are $20,000.00 USD (20K) …20 day stay
> 5 SCT’s are $23,300.00 USD (23.3K) this is a savings of $200.00 USD if the arrangements for 5 SCT’s are made at the time of your registration …25 day stay
> 6 SCT’s are $26,300.00 USD (26.3K) this is a savings of $700.00 USD if the arrangements for 6 SCT’s are made at the time of your registration …30 day stay
> 7 SCT’s are $29,300.00 USD (29.3K) this saves you a total of $1200.00 USD if the arrangements for 7 SCT’s are made at the time of your registration …35 day stay
> 8 SCT’s are $32,300.00 USD (32.3K) this saves you a total of $1800.00 USD if the arrangements for 8 SCT’s are made at the time of your registration …40 day stay
**These discounts do not apply if you wait until you are on site to opt for additional stem cell transfusions**
Bone Marrow Surgery: there is an additional cost of $5000.00 USD for this procedure if booked at the time of your registration. If booked on site the cost is $5500.00 USD. If you are interested in obtaining this in addition to the above treatment please let us know at the time of your registration. This procedure is only available to those already undergoing a full treatment program. We must know at the time of your booking if you wish to have this procedure. For more detailed information on this procedure please ask your medical consultant.
*Currently we only offer BMT’s at our Hang Zhou location.
If for any reason the doctors at the treating facility determine after your evaluation that you are not a suitable candent for a BMT your funds will be refunded or you can opt to have the applied to additional stem cell transplants.
NOTE:
Each transfusion contains approximately 10 to 15 million stem cells. Along with each transfusion patients are also given a transfusion of Neural Growth Factors. Transfusions are given IV and/or via transfusion into the Cerebral Spinal Fluid. This determination is made on site by the treating medical team.
You can request if you wish to have all stem cell transplants by IV only.
Included are free transportation to and from the hospital via car or minivan and the local airport and free accommodations at the hospital for the client and one caregiver. We also offer a complementary rehabilitation program. This therapy which is customized for each individual patient is provided free of charge and may be 1 to 2 hours done 4 to 6 times per week depending on the patient’s ability to participate (Sunday’s off). Meals and laundry service are not included. Meals are not served at hospitals in China. You can have your laundry picked up and done by an outside service at a reasonably low price.
Note; there is an additional fee for transport via a Handicap Van with a wheelchair lift of $200.00 round trip (see below).
* Additional transfusions booked at least one month prior to treatment (this is on a case by case basis depending on room availability) are US $3,500 each. Each transfusion may require an additional 2-5 days in the hospital. This option is only available to those already participating in a full treatment program.
** If you opt for additional transfusions outside of the above parameters and/or during your hospital stay they will be $3,900 US each. This may require an additional time in the hospital and/or that you stay in a hotel near the hospital, which would be at your own cost. This option is only available to those already participating in a full treatment program.
NOTE: There is an additional transport charge of $200.00 USD round trip for those with electric, non-collapsible chairs that require a handicap accessible van with a ramp and/or lift.
This type of transport would also be needed for anyone unable to be transferred into a typical van seat and/or those who would need to remain in their wheelchairs during transport.
Transportation by ambulance; if you are not able to be transported in a van and will require transport by ambulance there is an additional cost of $800.00USD per trip (one way). This must be arranged for in advance so please let us know if this is a concern for you.
Electric Wheelchairs; We advise that you bring the lightest and most compact chair you have. Large, heavy, non-folding or non-collapsing chairs are very difficult to travel with and to transport in our SUV type vans which do not have ramps or lifts.
Shanghai Airport; we no longer offer transport from Shanghai.
PLEASE NOTE:
• A deposit of approximately 20% is required to be made within two weeks of booking your treatment. Deposits are considered non-refundable except in the case of medical / emergency situations and proper documentation of such must be supplied and verified. Should a refund be issued you will be expected to pay all banking fees which apply to all transactions.
• We have a flat transaction fee of $100 per transaction that will be charged to the client. This is a pre-set “penalty and processing fee” for cancellations and refund transactions. A transaction is each time money has been moved into our account and when we have to move it back out as a refund.
• If you wish to apply for a refund you must do so at least 30 days prior to your arrival date. No refunds are given within 30 days of your arrival date.
• If for any reason you cancel within the 30 day time frame no refund will be granted. If a medical emergency arises and you are unable to travel and the proper documentation is supplied we can and will rebook you. If this should occur there may be a rebooking fee of $1000.00 which must be paid prior to new treatment dates being given.
• If you need to rearrange your dates after your original booking we will be happy to carry over your deposit to your new travel dates. However all payment due dates will remain unchanged.
• Your final payment is due 30 days prior to your arrival date. We will give you exact due dates at the time of your registration.
• If during your hospital stay you become ill and/or require medical treatment as a result of something other than an issue related to the stem cell treatment you will be responsible for the payment of the additional care to the hospital.
• If for some reason you opt to extend your stay in the hospital please note that you may be charged an additional $200.00 USD per day for hospital fees.
• If the patient arrives with any amount still showing as "balance due" this amount must be paid in cash upon arrival and treatment will not begin until all monies have been paid.
• There is a $100.00 USD “change fee” which will be applied should you opt to change your treatment dates once you have been sent your confirmed booking. This fee also applies to any requests for a change in location.
• Should the client fail to pay their deposit and/or final payment on time their booking will be cancelled and they will then be required to pay in full in advance prior to being granted new treatment dates.
Extra Charges:
In addition to the items noted above also please note that there are extra charges for the following items noted below. Some of these issues may be noted prior to your arrival and can be paid for in advance. If these items are not noted until the patient’s arrival the fees will need to be paid prior to beginning treatment. Fees must be paid in cash to the on-site accountant. Should the patient require any of these types of treatments for any reason during their stay payment is required to be made in full prior to the final stem cell transfusion.
Antibiotics $42.00 USD per dose
Wound care/ pressure sores $15.00 USD per wound per day
Oxygen $4.00 USD per day
Suction $4.00 USD per day
Trach Care $135.00 USD per day
Round trip Handicap Van Service: $200.00
Policy regarding unpaid fees:
If for any reason a patient fails to pay for treatments and/or services received Beike bio-tech reserves the right to withhold the final stem cell treatment. The amount due would be deducted, using a calculated cost of $2500 for the final treatment and the balance refunded. Also deducted would be the transaction fee noted above and an additional "failure to pay" fee of $100.00 USD.
Prices for treatments in China are reviewed on a quarterly basis and are therefore subject to change. As the market value of the “dollar” changes in relation to China’s currency of RMB we must alter the prices in USD to match its relational value to the RMB. Please note that while it may seem as if the price is increasing it is in fact not as the prices are keep stable in RMB currency. Rather it is the currency exchange rate which is constantly changing and we must alter our quoted prices to reflect this. All prices are set in USD as it is considered to be the standard world exchange and therefore all payments must be made in US Dollars. We find it best to review prices every three months and make adjustments on a quarterly basis.
Uji coba cankok sel pada tikus
Stem Cell Transplantation Benefits Mice With Childhood Motor Neuron Disease
ScienceDaily (Sep. 8, 2008) — The motor neuron disease spinal muscular atrophy (SMA) is the second most common genetic disorder leading to death in childhood. There is currently no cure for SMA, but some clinicians and researchers consider stem cell transplantation as a potential therapeutic strategy.
And now, Giacomo Comi and colleagues, at the University of Milan, Italy, have generated data using a mouse model of SMA to suggest that spinal cord neural stem cells (NSCs) might be a possible treatment for individuals with SMA.
In the study, NSCs from mice in which a green marker protein was expressed only in nerve cells known as motor neurons (the cells that are defective in SMA) were transplanted into the fluid bathing the spinal cord of mice with an SMA-like disease.
The transplanted cells developed into a small number of motor neurons and the treated mice showed improved muscular function and increased lifespan, when compared with untreated mice.
Further analysis indicated that the major effect of NSC transplantation was that the transplanted cells improved the survival and function of the motor neurons already in the mice, making them more like normal motor neurons (at the gene expression level).
The authors therefore suggest that in the future, NSCs might be used in the development of therapeutic protocols for the treatment of SMA and other motor neuron diseases.
Neural stem cell transplantation can ameliorate the phenotype of a mouse model of spinal muscular atrophy. Journal of Clinical Investigation, September 3, 2008
Stem Cell -Potential terapi untuk SMA?
Di bawah ditampilkan beberapa video mengenai stem cell untuk SMA. Sebagai informasi bahwa memang hasil test untuk tikus putih, stem cell berhasil menambahkan kekuatan otot. Hasil riset akan di posting sesudah ini.
Namun, beberapa kalangan masih meragukan akan efektifitas stem cell ini untuk meningkatkan kekuatan otot penderita SMA.
Juga ditampilkan video yang menampilkan apakah penyakit SMA itu, untuk pengetahuan bagi khalayak ramai yang ingin mengetahui.
Sebagai pre-caution beberapa caption di dalam video ini mungkin agak "shocking" atau "mengejutkan" dengan keadaan anak penderita SMA type I (type yang severe atau berat) bagi orang yang tidak biasa melihatnya.
Sebenarnya videonya mau ditampilkan, tetapi setiap diupload kok error, ya sudah sementara diberikan link youtube lebih dulu. Mudah-mudahan di lain waktu videonya dapat langsung di upload.
http://au.youtube.com/watch?v=WVy21ywN_Gs&feature=related
http://au.youtube.com/watch?v=GWho0CkQuK8
http://au.youtube.com/watch?v=3g__03EYPkQ&feature=related
Gym course untuk penderita SMA
http://au.youtube.com/watch?v=t2i6ZYxsevU&feature=related
Senin, 31 Maret 2008
Kenapa penderita SMA biasanya mengalami gangguan pernafasan dan pencernaan
Karena penderita SMA tidak mampu mensintesa protein jenis tertentu, di mana protein itu sangat berperan dalam menghantar pesan dari otak ke jaringan otot untuk bergerak, maka otot penderita SMA menjadi lemah atau tidak bisa digerakkan (silahkan baca literatur dari Stanford yang sudah di post sebelumnya).
Tulisan ini juga mengambil point-point singkat dari Stanford yg sudah diposting.
1. Pada saat bernafas, otot di paru-paru harus bergerak. Gerakan otot di paru-paru sangat penting untuk mendapatkan supply oksigen untuk dipasok ke sel sarah merah, lemahnya otot pasien SMA di paru-paru membuat kemampuan menghirup oksigen terbatas, sehingga supply oksigen untuk dipasok ke sel darah merah berkurang. sehingga ada "multiflier effect" dari kurangnya oksigen sampai dengan kurangnya oksigen di dalam sel darah merah.
Apalagi, pada saat tidur gerakan otot kita melemah (tidak sekuat pada saat beraktifitas), demikian juga pada penderita SMA, sehingga bisa tersengal2 karena tidak ada pasokan oksigen di paru-paru. Itulah makanya penderita SMA perlu bantuan alat pernafasan, terutama pada saat tidur.
2. Lemahnya gerakan otot pencernaan (untuk mencerna usus perlu melakukan gerakan periltastik dsb), membuat makanannya yang terlalu berat tidak akan mampu dicerna dg sempurna oleh pasien SMA. Terutama dng SMA type berat yaitu SMA type I dan type II yang berat.