Do You Know About Invisible Illnesses?

indian Lamictal Have you ever heard of invisible illnesses? Do you have any clue what they are? Are you aware that some people you know may have an invisible illness that is ravaging their body on the inside, but shows little to no signs on the outside? Would it make a difference in your relationship with them? Unfortunately, it often does.

Take the case of Victoria Graham, a 23-year-old beauty queen from Maryland. Outwardly, Graham is a ravishing young beauty that surely captures the attention of many young men. When she walks out on the stage at a beauty pageant in a gown, she is a real crowd pleaser. However, when she turns her back to the audience to return to her place on the stage, many onlookers gasp at the sight of the same young beauty. Running from the base of her skull, down her spine to her tailbone is a telltale pink scar.

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Graham has suffered from an invisible illness her entire life, but that 25-inch scar extending the length of her back is the only outward sign. It’s there because she has undergone 10 surgeries on her brain and spine. Without those surgeries, she would not be able to stand up straight.

Graham suffers from Ehlers-Danlos syndrome (EDS). According to The Ehlers-Danlos Society:

“Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.”

“The Ehlers-Danlos syndromes (EDS) are currently classified into thirteen subtypes. Each EDS subtype has a set of clinical criteria that help guide diagnosis; a patient’s physical signs and symptoms will be matched up to the major and minor criteria to identify the subtype that is the most complete fit. There is substantial symptom overlap between the EDS subtypes and the other connective tissue disorders including hypermobility spectrum disorders, as well as a lot of variability, so a definitive diagnosis for all the EDS subtypes when the gene mutation is known—all but hypermobile EDS (hEDS)—also calls for confirmation by testing to identify the responsible variant for the gene affected in each subtype.”

Graham is also the president and founder of The Zebra Network, a group to bring attention to Ehlers-Danlos syndrome. The tagline for her social platform states:

“But You Don’t Look Sick: Making Invisible Illness Visible.” 

In a report on Graham and her invisible illness:

“The so-called ‘invisible illnesses’ that its victims, like Graham, endure every day can be physically, mentally, and emotionally grueling. Graham says that while she may appear normal to others, some days she is unable to walk more than a few steps without her body either crumpling on itself or causing her to lose consciousness.”

“‘On bad days I’ll get out my handicapped permit, and I’ve gotten yelled at for it in the middle of a coffee shop,’ Graham tells Babble. ‘There are understanding people, but a lot of people are cruel. Just because I don’t look sick, doesn’t mean I’m not sick’.”

All too often, we see or know people who suffer from one of the many invisible illnesses and we tend to judge them on what we see without knowing what they are going through or why they appear the way they do.

My daughter also suffers from an invisible illness. Physically, she appears normal but overweight. Many of her so-called friends and co-workers have judged her by her appearance and have said some very hurtful things to her about her weight. They are ignorant of the fact that she suffers from a rare condition known as McCune Albright Syndrome. It’s a non-hereditary genetic mutation that occurred sometime during early embryonic development. It manifests itself in a number ways, including tumors, fibrous dysplasia, loss of vision and more. Her tumors have caused excessive amounts of various hormones, including growth hormones and cortisol. In her mid to late thirties, she grew an inch and half in height and put on hormone caused weight. The secretions from the tumors have caused Cushing’s Disease along with a fatty liver and other health issues.

Not knowing about her invisible illness but knowing of her loss of vision, one of her so-called friends told her that she needed to do something about her weight, since she can’t see herself in a mirror very well. Our daughter was deeply hurt by the insensitive comment, since she does watch what she eats and exercises when she can. Doctors have told her that she’s doing a great job by not gaining a lot more weight which is what they expected.

Look around you and realize that around 138 million Americans have some type of invisible illness. Think about it before you say something to them that may be hurtful even though it may be said out of care and concern. They may look normal on the outside, but you may have no idea of what is happening inside their body. Their invisible illness may not only be affecting them physically, but also mentally and emotionally. They need your support, not your criticism.

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