About our project
note: all donations for this project are tax-deductible
About our Project
The 2013 Recipient of the 1st Annual Crohn’s Disease Warrior Patrol (CDWP) Rescue Grant is 51-year-old Crohn’s Disease patient Sandra Lee Bolda (Sandra Lee) of Biloxi, Mississippi (USA). Sandra Lee has suffered from Crohn’s Disease for 37 years. Now, due to overwhelming adversity and the severe progression of her Crohn’s Disease (see specifics below), she can no longer work and thus cannot afford to pay for even the most basic of medical care. The purpose of this MedStartr.com Project is to help fund the 1st Annual CDWP Rescue Grant so that the CDWP can help Sandra Lee obtain the appropriate medical care and alternatively to create the necessary medical documentation so she can apply for Social Security Disability benefits should her doctors deem her “Permanently Disabled.” Sandra Lee has very little medical documentation of her 37-year battle with Crohn’s Disease because in 2005, Hurricane Katrina devastated Biloxi, Mississippi and as a result she lost her job, home and medical records.
What is Crohn’s Disease?
Crohn’s Disease is an incurable, chronic, unpredictable, autoimmune Inflammatory Bowel Disease (IBD) which typically causes painful inflammation of any part of the digestive tract, i.e., from the mouth to the anus. Crohn’s Disease may affect as many as 700,000 Americans but it is also a “broad spectrum” disease in terms of its severity and pervasiveness. This means that while one Crohn’s patient can have 10+ abdominal surgeries, go to the bathroom 50 times a day and amass 100+ hospitalizations, another may never see the inside of a hospital and the disease will never be anything more than a minor inconvenience. The ostensibly “personalization” of Crohn’s Disease for different patients often makes it very difficult to diagnose, even harder to successfully treat and extremely challenging to manage.
When you have an autoimmune disease like Crohn’s, your body’s immune system is unusually over-active and it mistakenly attacks itself (researchers believe this is caused by a combination of genetic, hereditary and environmental factors), causing inflammation in the gastrointestinal (or digestive) track. This inflammation of the intestinal walls causes a “narrowing” which makes it extremely painful to “pass” food and sometimes even liquids. In some cases, the inflammation from Crohn’s Disease damages the lining of the intestine so that it cannot absorb nutrients, water, and fats from food eaten and then digested. Surgical removal of parts of the intestine can also cause this problem, which is generally referred to as mal-absorption. This can result in malnutrition, dehydration, vitamin and mineral deficiencies, gallstones and kidney stones. Among younger children, mal-absorption, and/or the side effects of the more successful and potent drugs used to control Crohn’s Disease may also delay growth and development thereby making Adolescent Crohn’s Disease even more challenging.
In extreme cases, the intestinal inflammation caused by Crohn’s Disease can block the digestive passageway and cause an “obstruction” like water trying to pass through a fully bent “kink” in a garden hose. To avoid a life-threatening perforation of the bowel, surgical intervention is often required to clear the obstruction or widen the narrowing by removing diseased portions of the intestine or the blocking scar tissue which has formed from the inflammation or from prior surgeries. However, Crohn’s Disease can be chronic and aggressive such that the inflammation can return days or weeks after such a surgery and then eventually the patient runs out of intestine to remove. Additionally, surgical intervention typically leaves scar tissue or adhesions making surgery ill-advised for Crohn’s Disease patients as surgery usually begets more surgery but, nevertheless, in some patients it is necessary due to the relentless severe pain, disabling lifestyle interruptions and potentially life-threatening complications from the inflammation, narrowings and obstructions.
In other extreme cases such as Sandra Lee’s, it is necessary to create an Ostomy which refers to the surgically created opening in the body for the discharge of body wastes. These typically include colostomies, ileostomies and a J-pouch procedure, which is what Sandra Lee had performed, during which the colon and most of the rectum were surgically removed and an internal pouch was formed out of the terminal portion of the ileum. An opening at the bottom of this pouch was attached to the anus such that the existing anal sphincter muscles are used for continence. That said, before an Ostomy is considered, much patient suffering occurs and a variety of non-surgical treatments are attempted. This explains many of the hospitalizations Sandra Lee experienced after she was diagnosed with Crohn’s Disease at the young age of 14.
If the inflammation caused by Crohn’s Disease in one area of the digestive tract spreads all the way through the intestinal wall, the inflamed area can literally “stick to” other organs and structures in the abdomen. This leads to the formation of “fistulas” which can develop between the intestine and the other organs and structures it is not normally connected to; such as between different parts of the bowel, the bladder, the vagina, or even the skin on the outside of the body. This is obviously serious and requires immediate medical attention because the contents of the intestine can enter into these other sites, causing infection and other medical problems. Crohn’s Disease can also cause problems around the anus. These may include painful cracks in the skin known as “anal fissures” (i.e., a tear in the lining of the lower rectum (anus) that causes pain during bowel movements) or an “abscess,” a tender pocket of inflamed or dead tissue or pus that is also usually very painful.
In addition to the above potentially serious, painful and disabling medical problems inherent in Crohn’s Disease, the often potent medications used to control the disease can have severe side effects such as various forms of cancer, osteoporosis, diabetes, cataracts, fatal lung fungal infections, chronic respiratory problems, dangerous liver conditions, pancreatitis, anxiety and extreme fatigue. Also, people who suffer for several years with one (1) incurable autoimmune disease like Crohn’s Disease often begin suffering from another incurable autoimmune disease such as Rheumatoid Arthritis or Lupus. The bottom line is that Crohn’s Disease can have unpredictable and devastating physical, mental, emotional, financial, social, professional and familial effects. As in Sandra Lee’s case, the potential pervasive effects of Crohn’s Disease can affect your life significantly; including everything from your appearance to your diet to your lifestyle to your relationships and even to your choice of careers, that is, if it doesn’t disable you.
This Year’s Recipient: Sandra Lee Bolda
Sandra Lee first came to the attention of the CDWP when she participated in various Crohn’s Disease health care social media platforms to help other patients. Eventually she learned about the 2013 CDWP Rescue Grant and submitted an application. While there were several worthy applicants, Sandra Lee’s story was the most compelling due the unprecedented and diverse amount of adversity she has withstood; all the while never stopping her efforts to help other Crohn’s or Ulcerative Colitis patients suffering just as much, or worse, as she was.
Sandra Lee is 51-years-old and has suffered from Severe Crohn’s Disease for Thirty-Seven (37) years after being diagnosed at the young age of 14 years-old. During that time she has had numerous surgeries and been hospitalized MANY TIMES to alleviate her severe pain and unpredictable intestinal blockages culminating in an operation which removed her colon and left her with a “J-Pouch.” As described above, this pouch provides a storage place for her stool in the absence of a large intestine. Over the past 37 years, she has been hospitalized so many times for Crohn’s Disease-related issues that the cumulative amount of her hospitalizations adds up to approximately TWO (2) YEARS of living in the hospital!! While she struggled with her health, she always maintained a job either as a secretary or as a casino dealer at a casino in Biloxi, Mississippi. However, in 2005, Hurricane Katrina, which decimated New Orleans, completely destroyed Biloxi and Sandra Lee lost her home, her job and all of her personal belongings, including her medical records. The trauma of Hurricane Katrina also caused Sandra Lee to suffer from Post-Traumatic Stress Disorder (“PTSD”) so she moved as far away from the coastline as possible and settled in Arizona.
But Sandra Lee’s Crohn’s Disease was seriously agitated by the stress caused by Hurricane Katrina and also by the simple passage of time via the formation of scar tissue, strictures and fistulas in and around her J-Pouch which caused such tight internal “narrowings” that Sandra Lee began to suffer intermittent and unpredictable bouts of severe cramping pain and “explosive” unpredictable diarrhea (there’s no other dignified way to describe this). She was already in the bathroom between 20 and 40 times a day and hadn’t slept through the night in thirty (30) years but now her symptoms were getting even worse and it became impossible to hold down a job. Additionally, due to having taken the anti-inflammatory steroid Prednisone for many years, Sandra’s teeth were also beginning to fall out or they required extensive repair. Unfortunately, dental problems are common with Crohn’s Disease and Ulcerative Colitis patients who take Prednisone for extended periods of time. Sandra Lee also developed severe joint pains in her hands and feet which were either from her Crohn’s Disease, side effects of various Crohn’s drugs she had taken or she was developing another autoimmune disease such as Rheumatoid Arthritis.
Having worked for approximately 30 years, Sandra Lee thought she could easily qualify for Social Security Disability but each time she applied she was denied either because she had minimal medical documentation of her deteriorating autoimmune conditions (as she couldn’t afford to pay for medical treatment or diagnostic tests) or she had medical documentation that was several years old. She then moved back to Biloxi, Mississippi to live with friends despite her PTSD because she had no money and needed a place to call “home.” Her symptoms then worsened to the point where she was either in the bathroom or lying in bed because any pressure on her feet or hands was intolerably painful. At some point she qualified for Poverty-related medical care offered to her on a “sliding fee scale” basis but those doctors would only treat her Crohn’s Disease with the “textbook” drug of choice, namely, Prednisone.
While Prednisone can be very effective in reducing inflammation and thus helping patients with Crohn’s Disease who for some genetic reason cannot fight inflammation like normal healthy people, it has many short- and long-term side effects which necessitate additional medical or dental care. Moreover, the continued use of Prednisone over extended time periods has been known to weaken the body’s bone structure and cause osteoporosis thus potentially causing more problems than it solves. Additionally, these doctors could not treat Sandra Lee’s pain, anxiety or evaluate her internally to see if she needed her J-Pouch repaired in case a build-up of scar tissue, adhesions or the formation of fistulas were causing her “narrowings” or strictures and thus her painfully explosive and unpredictable diarrhea.
Like many Crohn’s Disease patients with no money and no insurance, Sandra Lee was forced to live with an extremely painful and difficult reality. The Crohn’s Disease Warrior Patrol felt her situation warranted intervention to try and get Sandra Lee basic medical care. To that end, the CDWP donned her 2013 Recipient of the Annual CDWP Rescue Grant and are seeking to fund the Grant with $8,000. That money will be controlled by the CDWP while the CDWP helps Sandra Lee schedule the necessary doctor appointments, undergo all prescribed diagnostic tests and obtain necessary prescription drugs. The CDWP will negotiate medical fees with these health care professionals and hopefully appeal to their humanitarian spirit to help this courageous, tough woman from suffering any longer. $8,000 may not pay for all of the medical issues which Sandra Lee needs addressed but it will make a difference in her quality of life and in her peace of mind. In that regard, just the fact that we are trying to help her has already lifted her spirits.
We think her situation is compelling and we hope you agree and have the ability to help us – - – help Sandra Lee.
What is the Crohn’s Disease Warrior Patrol (CWDP)?
The Crohn’s Disease Warrior Patrol (CDWP), is a 501 © 3 Non-Profit Charitable Foundation (as determined by the Internal Revenue Service of the USA) predicated on the simple premise that “Patients helping other Patients is often the Best Medicine.” We find this concept to be particularly appropriate for complex autoimmune diseases such as Crohn’s and Ulcerative Colitis because the Patient-time constraints placed upon health care professionals in modern-day healthcare leaves no time for the individualized patient care often required by these diseases as they tend to have a broad spectrum of severity and successful treatments. Furthermore, the side effects of these treatments are often just as painful or troublesome as the underlying autoimmune disease. Accordingly, the CDWP coordinates a Peer-to-Peer Support Network in which experienced Patient “Warriors” share their personalized knowledge with “Patients-in-Need” via personal, verbal, visual or written support so the loneliness, frustration, fear, depression and other isolating aspects of managing or coping with these diseases is minimized.
In furtherance of these Patient-to-Patient Support objectives, the CDWP has established an Annual “Rescue Grant” the purpose of which is to help patients with Crohn’s Disease or Ulcerative Colitis who require “basic” short-term medical care but who cannot afford to pay for it. More specifically, the CDWP Rescue Grant is not intended as a long-term solution to funding medical care for a patient. Rather, it is intended to help financially struggling patients obtain critical and stabilizing medical care for acute bouts or flare-ups of their Crohn’s Disease or Ulcerative Colitis. This medical care may extend to complications from Crohn’s Disease or Ulcerative Colitis and to “systemic” symptoms/conditions which often accompany these autoimmune diseases and their medical treatments such as severe joint pain, dental problems, vision issues and even other autoimmune diseases.
Like many Crohn’s Disease patients with no money and no insurance, Sandra Lee was forced to live with an extremely painful and difficult reality. The Crohn’s Disease Warrior Patrol felt that warranted our intervention to try and get Sandra Lee basic medical care. To that end, we donned her 2013 Recipient of the Annual CDWP Rescue Grant and are seeking to fund the Grant with $8,000. That money will be controlled by the CDWP while the CDWP helps Sandra Lee obtain the necessary doctor appointments and undergo necessary diagnostic tests. The CDWP will negotiate fees with these health care professionals and hopefully appeal to their philanthropic capacity to help this courageous woman from suffering any longer. $8,000 may not pay for all of the medical (or surgical) issues which Sandra Lee needs addressed but it will make a difference in her quality of life and in her peace of mind. We think her situation is compelling and we hope you have the ability to help us, help Sandra Lee.
How is the Recipient of the Annual CDWP Rescue Grant selected?
As the CDWP is a NEW charity (i.e., it was incorporated on February 4, 2013 and received its IRS Favorable Tax Exempt Determination Letter on July 14, 2013), we are using Crowd Source Funding to help establish the 1st Annual CDWP Rescue Grant. In that regard, we also think “People helping other People are often the Best Medicine.” Therefore, the Annual Recipient of the CDWP Rescue Grant is selected based upon Patient Applications obtained from the CDWP website (www.TheCDWP.org). Qualifying Patients must meet several criteria to ensure the CDWP identifies the neediest Patients; whether they are based on medical severity, financial hardship and/or a combination of both. These qualifications include, but are not limited to, applicants who are 25 years-of-age or older; applicants whose taxable income is below $20,000 for each of the two (2) years prior to applying; and applicants who are not receiving Social Security Disability benefits.
Who Operates CWDP?
The CDWP was founded in February, 2013, by 30-year Severe Crohn’s Disease patient and advocate, Michael A. Weiss, Esq., MBA. Michael is a “Professional Patient” having been hospitalized over 200 Times and enduring approximately 20 major surgeries related to his 30-year battle with Crohn’s Disease. Now disabled as a result of the systemic effects of Crohn’s Disease and the side effects from the various medications he took to treat it, he is: a Crohn’s Disease patient expert; a chronic illness and healthcare commentator/writer; the author of the critically-acclaimed book Confessions of a Professional Hospital Patient a globally featured medical/healthcare blogger; a multi-media journalist and when healthy enough to do so, a regular contributor to the “Healthcare Leadership” TweetChat. He is the founder, main blogger/vlogger, editor-in-chief and producer of the Blog, HospitalPatient.com and the YouTube channels The Medical Minute and The Healthcare Interview where he opines on cutting-edge topics such as “Deadly Dose,” the 2012 CNN television program hosted by Dr. Sanjay Gupta regarding the perils of prescription opioid painkillers and interviews people truly making a difference in Healthcare such as Dr. Kevin Pho of KevinMD.com.
The CDWP rose out of Michael’s frustrations with both the lack of mainstream awareness of the potential severity of Crohn’s Disease and IBD and the need for newly hospitalized or diagnosed Crohn’s and IBD patients to receive more personalized care since these types of diagnoses, hospitalizations and medical treatments can be very difficult physically, psychologically, emotionally, diagnostically, financially and professionally. The CDWP is premised on Michael’s belief that: “Patients helping other Patients is often the Best Medicine.” In that regard, the CDWP was aggressively launched in 2013 utilizing various health care social media platforms (YouTube, Facebook, Flickr, Google+, Vimeo, Pinterest, etc.) and the CDWP website matching Veteran Crohn’s/IBD patients (“Warriors”) with Patients-in-Need of personalized support by disease similarities, gender, age, temperament and geographical proximity. Michael is assisted in operating the CDWP by a number of dedicated volunteers who are also Crohn’s Disease or Ulcerative Colitis patients and who share his passion for helping other IBD patients.
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