Support Astrid's Critical Surgery and Recovery

Hello! My name is Astrid Pearlman (they/she) and while it's not easy for me to ask, I need your help.

I need major surgery for two rare congenital conditions, intestinal malrotation and abdominal cocoon syndrome. My guts did not form correctly in utero — instead of rotating 270 degrees, they only rotated 90. Cocoon syndrome has caused my entire bowel to be stuck in one spot, encased in a thick membrane. The surgery will involve rotating my intestines the additional 180 degrees, re-creating the malformed ligament of Treitz, and possibly resecting the bowel.

Images from diagnostic capsule endoscopy:

In summary:

The esteemed Dr. Kareem Abu-Elmagd at the Cleveland Clinic Gut Rehab and Intestinal Transplant Center has pioneered a surgery for malrotation with incredible outcomes in adults. It is validating to have these rare conditions I was born with accurately diagnosed, finally, by the top physician in the world. Dr. Kareem has reviewed my case and, because of the rare cocoon syndrome, determined it cannot be done laparoscopically.

Open abdominal surgery comes with more risks and a longer, harder recovery. The surgery itself will take around 9 hours. Recovery will involve weeks in the hospital plus additional time in Cleveland for follow-ups. Then a couple of months to heal fully at home.

This necessary surgery is life-sustaining and has the potential to significantly reduce the disabling gastrointestinal symptoms I have suffered from for decades, including daily chronic pain and abdominal bloating so severe I am mistaken for pregnant. At times I have been unable to fasten my clothing after using a public bathroom because of the bloating that had occurred since I left the house.

I am 5’8” and 114 pounds. My stomach when I wake up is typically pretty flat. Throughout the day it becomes like this.

My body oscillates between these extremes.

I have poor quality of sleep due to nausea waking me up, which causes my husband to have poor sleep, contributing to his constant worry about me and hardships with his own health. I am in pain every single time I eat, which in addition to poor nutrition causes great difficulty with meal planning and socializing.

Any relief will improve my quality of life.

I have spoken with the social worker at the Cleveland Clinic Gut Rehab Center regarding financial help and there is none, save for small discounts at local hotels.

The funds I am seeking will primarily go towards surgical/medical costs and accessible lodging for one month in Cleveland. Any funds raised past this goal will be used for further medical costs and incidentals such as caregiving, medical transportation expenses, lost income, and meals.

I live with multiple disabling chronic illnesses, the main being Ehlers-Danlos Syndrome, a genetic connective tissue disorder characterized by joint hypermobility, fragile and stretchy skin, and systemic symptoms.

A few of the prescribed braces I wear to heal and protect my joints:

I also have several co-morbitidies of EDS including but not limited to Dysautonomia, Mast Cell Activation Syndrome, and Autism. I use a wheelchair and other mobility aids due to EDS and Dysautonomia to reduce joint dislocations and prevent fainting. I am unable to live alone due to Autism and my overall complex medical condition. Mast Cell Activation Syndrome causes allergic reactions to anything, at any time, that I don't have an actual allergy to, even if it was something I tolerated the day before.

Mast Cell reactions I’ve had:

These conditions affect the whole body causing additional problems, the most recent of which is malnutrition. I can barely eat and when I do, it is very painful. I currently have wounds on my face and limbs due to severe Vitamin C deficiency. This requires specialized infusions to treat, presumably for the rest of my life. Two of the providers on my care team are recommending a feeding tube.

Infusion

My chest port (with an MCAS reaction despite the barrier cream and the sensitive skin dressing used)

Wounds from scurvy:

My husband Robert, who is past retirement age and has health issues of his own, works nearly 50 hours a week in order to afford my medical expenses. He has to take unpaid time off work regularly in order to take care of me. I work as much as I am able to, in a part-time remote position for my synagogue.

Despite how hard we work, my medical expenses are extremely high and we are barely scraping by. Although I have been determined permanently disabled by Social Security, I am unable to collect benefits and have thus far fallen through every social safety net that exists in this country (not due to lack of trying or persistence)! We live paycheck to paycheck due to my exorbitant medical bills and even without the addition of out-of-state surgery, there are always medical bills due.

Due to my complex medical history, it is hard to anticipate how long my recovery will be. But suffice it to say that I do have slow healing and an increased complications rate secondary to Ehlers-Danlos Syndrome. Should there be any complications from this surgery, all of the above expenses will increase.

My surgery is scheduled for December 12th. I will be having tests locally in Northern Michigan first. The sooner I raise funds, the earlier in advance I can book our accommodations to get the lowest possible rate. Accessible rooms or apartments are few and far between in addition to often being priced as an upgrade. Another consideration is that this surgery is around Christmas, when rates typically skyrocket. I will keep you updated here as developments arise.

A little about me:

I am 34 years old and have been an entrepreneur since I was twelve. A creative and activist at heart, I plan to never stop learning. My educational background is in creative writing. I also love fashion.

Up until last year, I used my stylist skills to put together high fashion photoshoots from concept through creative direction. I used these photos of me, combined with my writing, to educate about disability justice on my social media platform. My runway performance at New York Fashion Week as an ambulatory wheelchair-using model went viral on TikTok with 3+ million views. It started a really important conversation about wheelchair users and disability, opening and changing a lot of minds.

October 2021

by Ryan Watkins Photography

February 2023

by Alex Malenkov

This year, I have gotten very involved with my local Jewish community. I organized the first-ever Jewish event for Pride in our area and formed our first Diversity, Equity, and Inclusion Committee. My Jewish values are my guiding light for everything I do in life; the biggest of which is Tikkun Olam, to repair the world. By helping me, you are not only doing the mitzvah of Tikkun Olam but you are enabling me to do more of it, as my health allows.

Thank you for reading, sharing, and for your consideration in donating!

Any amount has the potential to improve my quality of life and your generosity is appreciated beyond measure.

With love and gratitude,

Astrid