Scleroderma Patient
Scleroderma
The author of this report has been presented with a hypothetical situation where a forty-four-year-old patient has contracted scleroderma within her lung tissue. There are many implications to having this medical disorder and they are not limited to the medical realm. Indeed, this report will cover a number of these implications and byproducts including stereotyping by all of society including medical professionals, the overall predisposition for the disease, daily life of scleroderma, comorbidities that might exist or end up happing and social issues such finances, the environment and so forth. While there are a good number of things that can be done to mitigate, treat or even prevent scleroderma, there are a lot of implications that any scleroderma patient must face and it can be very difficult for the patient.
Analysis
Scleroderma is rare but it can take on many forms. Indeed, while the patient in this hypothetical situation has it in her lungs, it can actually affect many other places within the body. Scleroderma, at its core, just refers to a group of rare disorders whereby there is hardening and/or tightening of the skin and connective tissues of the affected area. These tissues and fibers are indeed what are needed to create the framework that supports the body. In many instances, scleroderma only affects the skin. However, the patient used in the hypothetical situation for this report as well as others have areas affected that go far beyond the skin. These others areas can include blood vessels, internal organs (like the lungs) and the digestive tract. Depending on where the scleroderma forms, the symptoms and signs of the disorder will vary greatly. In terms of gender, women are typically more often affected but both men and women can contract the disorder. There is no cure for scleroderma, but there are treatments that can improve quality of life and/or ease the symptoms experienced (Mayo, 2016).
The cause of scleroderma is an overproduction and accumulation of collagen in the body’s tissues. Collagen is a fibrous variant of protein that helps make up the body’s connective tissues, up to and including the skin. While this cause is known, the cause for the dysfunctional buildup is not known as of yet. However, there are clues that point to the immune system and the state thereof being a major catalyst. Indeed, there are some that may be triggered to develop scleroderma due to exposure to certain pesticides, resins or solvents. The complications that emerge from scleroderma can be moderate to nasty. In the case of the patient in this case, the scarring of the lung tissues that can result is known as pulmonary fibrosis. This can result in reduced lung function overall as well as high blood pressure, reduced ability to breathe properly and reduced tolerance for exercise and other physical activity (Mayo, 2016).
For fingertips, ulcers and other things can develop and this can ultimately end up causing fingers to be amputated. When scleroderma affects the kidneys, it can cause elevated blood pressure and increased levels of protein in the urine. More serious cases of scleroderma in the lungs can lead to renal crisis and even kidney failure. When the teeth are affected, there is the happenstance of the mouth space becoming tighter and more cramped due to the aforementioned tightening. Saliva production is usually diminished a good deal and this creates a higher risk of dental decay than a patient that does not have scleroderma, all else equal. When there is scleroderma in the digestive system, there is a greater amount of acid reflux and a greater difficulty swallowing. There is often the sensation of food getting stuck in the esophagus as well as bouts of either constipation or diarrhea, if not both. When it comes to sexual function, scleroderma can play a negative role with that as well. Men with the disorder quite often have erectile dysfunction. With women, there is a decrease in lubrication and an overall constriction of the vaginal opening (Mayo, 2016).
Testing for and verification of the disease being present can be a tricky thing. However, there are ways to do it. The use of blood testing, biopsies and other similar tests can be used to identify and troubleshoot abnormalities. When the lungs are involved, such as is the case for the patient mentioned in this report, the use of breathing tests, otherwise known as pulmonary function tests, and CT scans can be used. In some instances, an echocardiogram of the heart might be useful. As far as the medications that can be used, they only deal with the symptoms and not the disease itself. Indeed, examples of this include medications to dilate the blood vessels, to suppress the immune system, to reduce stomach acid, to prevent infections and to relieve pain are all on the table depending on where precisely the scleroderma is present and active (Mayo, 2016).
Therapy can also be used to address the symptoms of scleroderma. These therapy options are meant to address or otherwise deal with the management of pain, the improving of strength of mobility and the maintaining of independence when it comes to daily tasks (Mayo, 2016) Some academic sources are quick to point out that both treatment options as described above as well as therapy options to assist scleroderma patients must be meted out and decided upon with caution (Reid & Dechman, 1995). Beyond that, the predispositions towards scleroderma are a huge part of the diagnosis of the disorder. Indeed, one’s medical history is a big part of the diagnosis process. However, this is coupled with a physical exam, lab tests and/or biopsies, as mentioned before. The treatments and options that exist have led to scleroderma patients being able to lead better and more prolonged lives than in the past given the same circumstances (NIH, 2016).
Two of the nasty byproducts of people suffering from diseases is stereotyping by any number of people (including medication professionals) as well as people that otherwise stigmatize people with scleroderma or disabilities in general. To use an ancillary yet related example, there was recently a woman who got a note left on her car that chastised and criticized her for parking in a spot earmarked for veterans. However, the person that left the note was grossly misinformed as the woman was indeed a veteran of the Navy. In the end, the note-leaver apologize but it was beyond presumptuous to just assume by sight that someone is or is not a veteran. Surely, sexism probably crept into the leaving of the note as the note-writer probably assumed that the person was not a vet given her gender (Military.com, 2016). Much the same thing happens with people that have disabilities and scleroderma is certainly something that could lead to such an end. In the case of our patient that has lung scleroderma, this stereotyping could absolutely happen. Indeed, it is quite likely that the woman could be considered disabled and/or collect Social Security Disability (SSD) due to her scleroderma. However, it would probably not be obvious or apparent to the naked eye that she is disabled. This could lead to people presuming she is a simply a “leech” off of society and/or that her “disability” is not all that severe so as to warrant a handicap placard (IDA, 2016). Such behavior and thoughts are outmoded and ignorant to say the least. However, such stigmatizing or even general stereotyping that is not, at its core, meant to be insidious or mean happens all of the time and this includes within the medical community among the providers and professionals. However, this stereotyping and other forms of ignorance and/or bad care is dangerous given the comorbidities that exist when it comes to the disorder. These include cardiovascular issues, kidney/renal issues, liver problems and several neuropsychiatric disorders. All of these are created or aggravated by the presence of scleroderma in or around the affected areas (Robinson, 2008).
There have been studies to combat this ignorance and stereotyping. As recently as 2003, there was a study that was specifically meant to study the life experiences and struggles of those with scleroderma. In this scholarly study, the aim was to “understand, from the individual’s perspective, the experience of living with scleroderma” (Joachim & Acorn, 2003). The study went about the process of having focus groups with patients that suffered from scleroderma so as to understand how they felt and what they were going through. Indeed, having lung-centered scleroderma, such as the patient mentioned in this report, would affect her breathing and she would likely get tired quite easily. This would impact even the most basic of tasks such as doing housework, running errands or otherwise doing normal things that others might take for granted. This would surely leak into and otherwise affect social situations where physical exertion and such might be required. Beyond that, disclosing and sharing that one has such a disease that is so rare and not widely known about could lead to assumptions and fears that the disorder is contagious or something like that. A comparable situation would be people that psoriasis in visible areas on the arms, legs and neck. However, psoriasis is not an infection and is not contagious, thus making is similar to scleroderma. That being said, ignorance can be a very infectious thing and people that are not informed will presume the worst and engage in behaviors that are less than fair or nice, even if that is not the intent of the person engaging in said behavior (Joachim & Acorn, 2003).
While many medical professionals focused on speech may only see one case a year when it comes to patients with scleroderma, it is still no less important that these professionals focus on the right things they come around. This is especially true when treating patients that themselves have speech issues due to scleroderma. It is vital that the professional communicates and works with the patient in the right way so that the patient is open about what they are experiencing, thus making it more likely that the scleroderma is identified and dealt with if that is not already the case. Further, a professional speech/language pathologist needs to be able to help any scleroderma patients retain and maximize their communication abilities even as they suffer from scleroderma. Finally, it is important to create and uphold a proper intervention as early as is possible as scleroderma, like many diseases and disorders, is much harder to deal with the more advanced it has become before mitigation and treatment (SANY, 2011). Another integral part of helping a scleroderma is making them and keeping them motivated through sound and established techniques. This is also something that is key when it comes to studies and research on the subject of scleroderma. Indeed, people associated with clinical trials and such will help yield better results if they are full and active participants in what is being looked at. Regardless of the scenario, it is important that patients be motivated to address their disorder in a proverbial scorched earth fashion because doing otherwise can actually end up being fatal, especially if the disorder is affecting vital organs such as the lungs, kidneys or liver. Beyond that, many forms of scleroderma, even those that do not directly affect those organs, cause higher blood pressure and this itself can cause massive medical or daily life complications and some of those are potentially life-threatening (UK Group, 1998).
As for issues and questions that are of particular focus to women in their mid-40’s, it would depend on their circumstances. It is quite likely that they would have children. These children might be grown or they might be in their teen years. Obviously, that would depend on when they started their family. Beyond that, women in that age group are probably not in college or other school-based endeavors but they might be. In addition, they may be stay-at-home parents but it is quite likely they have a career or something else that they do outside the house. Whether the children (if any) are grown would certainly have bearing on that. Regardless of any of the above, women in the middle of their adult life are going to be slowing down at least a bit even if they are completely healthy. They may or may not be experiencing menopause at that age. It often comes later in life such as in the late 40’s or 50’s but it can come earlier. Something else that has to be considered is that many of the nastier and more lethal disorders and diseases that can develop often come in the middle and latter stages of life. Some of the maladies are just age-related but there are many that are based on environment, family history and so forth. The general propensity for women in their 40’s to slow down a bit can be a notable liability for someone that has scleroderma. The patient will almost certainly not be as active as they otherwise would be and this could lead to a lifestyle and outcome where she becomes less and less active. This could lead to the disease having an easier progression path to get worse, obesity, and so forth. This patient needs to keep and remain active as becoming sedentary and otherwise active will made the scleroderma hit harder and other problems are sure to develop on top of that. Basically, the patient is having to shoulder the burdens of her age group and gender and then she gets scleroderma and its associated effects thrown on top of that. It is, of course, a good idea to remain active and as fit as possible irrespective of the medical curveballs that one throws at a patient. However, it is doubly important to gain or keep said motivation when scleroderma develops. Not unlike other disorders and such that must be attacked and fought head-on, scleroderma must be handled in much the same way or length of life and the quality thereof will be compromised.
Conclusion
The treatments for scleroderma will surely improve over the coming years just as has already been the case thus far. Even if the treatments that are existing right now are all about managing and mitigating the disorder rather than curing it, the latter will surely come eventually. At one point, HIV / AIDS was considered to be death sentence that is to be meted out within five to ten years, sometimes even less. However, people with the proper access to drugs and other therapies can lead productive and fruitful lives. They still have the disorder but they are able to keep it in check. It would seem that scleroderma is following that path for now but, just as with HIV and AIDS, a cure would be the best outcome for any current or future patients suffering from either disorder.
References
IDA. (2014). Don’t Judge by Appearances – Invisible Disabilities Association – IDA. Invisible Disabilities Association – IDA. Retrieved 4 July 2016, from https://invisibledisabilities.org/ida-books-pamphlets/accessibleparking/dontjudgebyappearances/
Joachim, G. & Acorn, S. (2003). Life with a rare chronic disease: the scleroderma experience. – PubMed – NCBI. Ncbi.nlm.nih.gov. Retrieved 4 July 2016, from http://www.ncbi.nlm.nih.gov/pubmed/12787233
Mayo. (2016). Overview – Scleroderma – Mayo Clinic. Mayoclinic.org. Retrieved 4 July 2016, from http://www.mayoclinic.org/diseases-conditions/scleroderma/home/ovc-20206014
Military.com. (2016). Navy Vet Says She Got Apology Note after Parking in Vets-Only Space. Military.com. Retrieved 4 July 2016, from http://www.military.com/daily-news/2016/06/22/navy-vet-says-she-got-apology-note-parking-in-vets-only-space.html
NIH. (2016). Fast Facts About Scleroderma. Niams.nih.gov. Retrieved 4 July 2016, from http://www.niams.nih.gov/Health_Info/Scleroderma/scleroderma_ff.asp
Reid, D. & Dechman, G. (1995). Considerations When Testing and Training the Respiratory Muscles. Physical Therapy, 75(11), 971-982.
Robinson, D. (2016). Systemic sclerosis prevalence and comorbidities in the U.S., 2001-2002. – PubMed – NCBI. Ncbi.nlm.nih.gov. Retrieved 4 July 2016, from http://www.ncbi.nlm.nih.gov/pubmed/18430269
SANY. (2011). The Effects of Scleroderma on Voice and Swallowing. Speech Associates of New York. Retrieved 4 July 2016, from https://speechassociatesofnewyork.wordpress.com/2011/06/01/the-effects-of-scleroderma-on-voice-and-swallowing/
UK Group. (1998). How can treatment of systemic sclerosis be improved?: By setting up a national database of all cases and entering patients into trials. BMJ: British Medical Journal, 317(7154), 294. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1113627/
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