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INVISIBILE by Rachel A Bonner Hope For Crohn's
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INVISIBLE: A DISEASE NOT SEEN

LIVING WITH CROHN'S IS A LIFESYTLE

Patient Advocacy

ADA: American Disabilities Act 
     The ADA prohibits discrimination on the basis of disability in employment, State and local government, public accommodations, commercial facilities, transportation, and telecommunications.

     To be protected by the ADA, one must have a disability or have a relationship or association with an individual with a disability. An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered.

     Crohn's disease major life impairment recognized by ADA is the operation of a major bodily function, including but not limited to, functions of the immune
system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and
reproductive functions. Additionally, an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when it is active.
       
     Title I requires employers with 15 or more employees to provide qualified individuals with disabilities an equal opportunity to benefit from the full range of employment-related opportunities available to others. EEOC  is the agency to contact for assistance for charges of employment discrimination on the basis of disability.

Rehabilitation Act

     The Rehabilitation Act prohibits discrimination on the basis of disability in programs conducted by Federal agencies, in programs receiving Federal financial assistance, in Federal employment, and in the employment practices of Federal contractors. The standards for determining employment discrimination under the Rehabilitation Act are the same as those used in title I of the Americans with Disabilities Act.

Section 504

     Section 504 states that "no qualified individual with a disability in the United States shall be excluded from, denied the benefits of, or be subjected to discrimination under" any program or activity that either receives Federal financial assistance or is conducted by any Executive agency or the United States Postal Service.

     Each Federal agency has its own set of section 504 regulations that apply to its own programs. Agencies that provide Federal financial assistance also have section 504 regulations covering entities that receive Federal aid. Requirements common to these regulations include reasonable accommodation for employees with disabilities; program accessibility; effective communication with people who have hearing or vision disabilities; and accessible new construction and alterations. Each agency is responsible for enforcing its own regulations. Section 504 may also be enforced through private lawsuits. It is not necessary to file a complaint with a Federal agency or to receive a "right-to-sue" letter before going to court.

For information on how to file 504 complaints.

Individuals with Disabilities Education Act

The Individuals with Disabilities Education Act (IDEA) (formerly called P.L. 94-142 or the Education for all Handicapped Children Act of 1975) requires public schools to make available to all eligible children with disabilities a free appropriate public education in the least restrictive environment appropriate to their individual needs.

IDEA requires public school systems to develop appropriate Individualized Education Programs (IEP's) for each child. The specific special education and related services outlined in each IEP reflect the individualized needs of each student.  

IDEA also mandates that particular procedures be followed in the development of the IEP. Each student's IEP must be developed by a team of knowledgeable persons and must be at least reviewed annually. The team includes the child's teacher; the parents, subject to certain limited exceptions; the child, if determined appropriate; an agency representative who is qualified to provide or supervise the provision of special education; and other individuals at the parents' or agency's discretion.

If parents disagree with the proposed IEP, they can request a due process hearing and a review from the State educational agency if applicable in that state. They also can appeal the State agency's decision to State or Federal court. For more information, contact the Office of Special Education and Rehabilitative Services.
 


"Show them a million reasons why you can and will live your life."
-Rachel A Bonner

What is Crohn's Disease?

Crohn’s disease (CD) is a chronic inflammatory illness of the digestive tract which can also affect the liver, eyes, joints and skin. An “invisible disease”, most people with CD look like everyone else yet they may be suffering with severe abdominal pain, chronic diarrhea, intestinal bleeding, or required to take a handfuls of daily medications to keep the disease in remission.
Summer Camp Season

Summer is just a couple months away meaning there will be multiple opportunities for young Crohn's patients to meet others just like them at Summer Crohn's Camps. Having Crohn's, especially at a young age, can feel isolating. Which is why having the ability to meet and connect with other Crohn's patients can be unifying and inspiring. Below are two local organizations that organize Crohn's summer camps. In addition, they have great opportunities for adults to get involved as camp counselors.

Camp Go Beyond

Camp Oasis
Crohn's in College


Many say that college is one of the most memorable years of your life. There is that huge transition from living at home with your parents to moving on your own in the dorms, making new friends, getting used to classes, BUDGETING. College itself is a huge adjustment, however I never thought how different having Crohn's while in college would be. 

In June of 2016, I uprooted myself from my lovely Californian suburb and moved to go to a conservatory college in New York City to study musical theatre. I had always dreamed of living in New York and working towards my passion, but I never considered logistics when it came to my Crohn's disease. 

So on top of the usual college adjustments, came the Crohn's ones. My mom and I had to figure out how to ship my medications once a month from one side of the country to the other. Even though my school doesn't offer a meal plan, I had to figure out how to fit cooking based on my diet in my schedule. Because no matter how tempting it is to live in a city filled with delicious Italian food and pizza, sticking to my diet is extremely difficult, yet important. Also, figuring out insurance plans in different states and finding a doctor when needed. Explaining to my new friends and teachers what Crohn's disease is. And lastly, adjusting to 8 hours of dance classes per week, after not doing anything physical in years.

The transition from being a child with Crohn's to a Crohn's adult has been challenging, but exciting. Crohn's has become such a ordinary and big part of my life that it's fun to find myself taking ownership and fitting it into my new lifestyle. As I'm finishing out my last couple semesters, it'll be fun to see how my Crohn's lifestyle will continue to evolve. 
Medical Research Advances

Excerpt from Klein Lab News, "December 07, 2016
Congratulations to Roy Nattiv and our colleagues Matt Thomson and Jason Spence on a new publication entitled "In vitro patterning of pluripotent stem cell-derived intestine recapitulates in vivo human development" in Development." Publication link 2017 item #3. (4)

Excerpt taken from Centerwatch clinical trials, "TiGenix and Takeda Pharmaceutical have announced 24-week results of a phase III trial investigating Cx601 for the treatment of complex perianal fistulas in patients with Crohn’s disease with an inadequate response to at least one conventional or biologic therapy.Based on the data from this pivotal phase III trial in Europe, TiGenix submitted an MAA to the EMA in the first quarter of 2016, and a decision by the EMA could be expected in 2017. In the U.S., TiGenix intends to apply for Fast Track designation from the FDA.A pivotal phase III trial for Cx601 for the treatment of complex perianal fistulas is expected to start in the U.S. in 2017."(1)

Excerpt taken from CIRM( California Institute for Regenerative Medicine), "Mesenchymal stem cells (MSCs) are somatic, multipotent stromal cells with potent immunomodulatory and regenerative properties. MSC-microbe interactions have a profound effect on MSC function and may be pivotal in a variety of clinical settings where MSCs are being explored as potential therapeutics in the context of microbial communities, such as Crohn's disease, chronic nonhealing wounds, and sepsis." The scientists "hypothesized that gastrointestinal bacteria associate with MSCs and alter their immunomodulatory properties",(2)


Excerpt taken from CIRM,"Agonist monoclonal antibody therapeutic activating GPR49 for regenerative medicine.We plan to accelerate the promise of regenerative medicine by leveraging our experience in conventional antibody drug development to modulate a critical stem cell pathway involved in intestinal tissue regeneration" (3)


Reference: (1); (2);(3);(4)
Copyright © 2017 Hope For Crohn's, All rights reserved.


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