US$24,812raised of $54,000.00 goal
Hello! My name is Jeri Lim, 25 years old. I am from Singapore. I have a rare condition called Median Arcuate Ligament Syndrome (MALS). MALS is an abdominal compression syndrome in which a low-lying diaphragmatic ligament (a congenital/acquired variation) compresses on the nerves and/or artery involved in the digestive tract. In my case, there is only neurogenic compression. Symptoms include debilitating pain/pressure after eating, fatigue, weight loss, and even exercise intolerance. Currently, surgery is the definitive treatment and I have started this page in hopes of raising funds to afford the expenses required to have the surgery abroad in the United States (US). Full payment in US dollars is needed before a surgical date can be scheduled.
This is my story. I got sick early 2020. I suffered from indigestion, nausea and early satiety, and within a span of 9-10 months, I lost 10kg. My symptoms also progressed to pain end 2020. As of 2021, I get immediate tight squeezing upper epigastric pain whenever I eat or drink (including water), do aerobic exercise, deeply exhale, and after bowel movement; it was painful and suffocating. I ended up being tube fed with a nasojejunal tube that goes through my nose into the small intestines (gotten in 2021), getting 100% of my nutritional needs without eating while regaining my weight. Sadly, tube-related water flushes do still give me that same pain, something that is unavoidable and necessary to be done on a daily basis. With the addition of an undiagnosed issue in 2021 that affected my lower limb mobility, my quality of life has become poorer.
Between end 2020 to mid 2021, I had multiple scans and testing (endoscopy, PET-CT, CT scan, barium swallow, H.pylori, celiac test etc) done in Singapore and all showed normal results. The diagnosis went from SMA syndrome to unknown to eventually being chalked up to “functional” reasoning. The triggers of my pain made me feel something was not right, and I decided to do my own research. Through much time and connecting with support groups, I got to know the existence of MALS. Speaking with several already-diagnosed MALS patients also made me realise that my symptoms are an almost exact duplicate with theirs. I felt like I am close to getting some answers and then on start my journey to get a diagnosis in Singapore.
The journey was, however, difficult due to the rarity of the disease and it being misunderstood in the healthcare system. Having only neurogenic compression made it even more challenging. My local public doctors totally dismissed that possibility of me having MALS. I eventually sent my scans over to reputable US MALS specialists and spoke to them through televisit. According to them, my symptoms and lower-lying ligament anatomy are indicative of “neurogenic” MALS; ruling out other GI issues based on the normal results in the tests I did prior further support this. I was then told to get a diagnostic celiac plexus block (numbing the celiac ganglion nerves involved in MALS for a short duration of time), and if there is no pain when eating after the block, it further confirms the diagnosis and I will be eligible for MALS surgery. With a referral letter, I managed to find a local private pain specialist who was willing to perform the block. The block was a success and I was able to eat with zero pain during the short timeframe! In my eyes, it was truly a miracle!
With a confirmed MALS diagnosis, I was then offered surgery by a US surgeon. However, the cost of this surgery in the US is high, estimated to be around USD$39,275.67.
This is the breakdown for the medical bill: USD$32,20367 solely on hospital-related services, USD$1,000 for surgeon services, USD$600 for pre-surgery admission blood work, and USD$5,472 for anesthesiologist services. The quotation is based on a 4-day hospital stay though, and an additional of almost USD$1,000 will be charged for every extra day stayed. (Documentations can be found in this link: https://docs.google.com/document/d/11js4_iEN2O06eB...) (If you are using the phone to view the document, please do switch to Desktop version to view the images in clear)
Flights for two and accommodations are estimated to be around SGD$6,000 and around USD$3,500 (for about USD$140/night for 20 days with taxes) respectively (actual cost can be higher or lower).
*Estimated cost of medical cost, flights and accommodations updated as of 7 October 2022.
*There is platform fee of 4% , and processing fee of 3.4% + USD$0.50 for Stripe. 3.9% + USD$0.30 for Paypal for Singaporean donors, 4.4% + USD$0.30 for Paypal for overseas donors.
*Records of offline donations can be viewed in this link (for transparency): https://docs.google.com/spreadsheets/d/1f2N35BDflh...
I hope to be able to raise donations in USD to cover the medical expenses, and if possible flights for two and accommodations too! The funding goal inclusive of the platform and processing fees would add up to around USD$54,000. Any excess funding would be used to cover extra charges incurred from the actual bill (eg. addition stay at hospital) or donated to other charity causes.
I would appreciate any contribution that would grant me the chance to fix this compression in the US, stop the pain and get my life/health back. Every little amount counts! Thank you! Updates will be provided along the way as well. Please take note that the currency to be input in the checkout page is in USD too.
My medical report can be seen at the end of the page.
More information about MALS are in the links below:
- Info on MALS: https://www.drdannyshouhed.com/blog/find-effective-relief-from-mals-with-celiac-ganglion-resection/#:~:text=celiac%20plexus%20nerves.-,Dr.,ganglia%20for%20a%20complete%20recovery
- Symptoms of MALS by National MALS foundation: https://www.malsfoundation.org/adult-mals
- Video on MALS by the National MALS foundation: https://www.youtube.com/watch?v=z18MhxJFoMM
- Paper: Clinical Response to Celiac Plexus Block Confirms the Neurogenic Etiology of Median Arcuate Ligament Syndrome; https://pubmed.ncbi.nlm.nih.gov/33862195/
- Paper:The Celiac ganglion (artery) compression syndrome (CGCS); https://gastroenterologen.no/2013/11/the-celiac-ganglion-artery-compression-syndrome-cgcs/?fbclid=IwAR34MIwwqEEBy8Y2Npvkd1SqFFo0q_vcTg8ydkwwltkboGL0YFrSfOBOI8A
- List of publications related to MALS:
Offline donationsUpdate posted by Lim Han Shi Jeri at 08:09 am
Hi guys! From 29 September 2022 till today 20 October 2022, USD$10,717.14 have been raised offline. Part of it are donated from relatives and friends, and the rest are from those who volunteer at Palelai Buddhist Temple! I would like to thank them for their kind generosity :) By the
Update in estimatesUpdate posted by Lim Han Shi Jeri at 07:03 am
Hi! I finally received an estimate for anesthesiologist services just yesterday and I have updated it under "Campaign Story". For better transparency, I have included an estimate for the flights and accommodations, as well as a link containing the documentations for the medical bill estimates. The funding goal has been
Fundraising ProgressUpdate posted by Lim Han Shi Jeri at 06:58 am
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