There are a number of skin diseases that cause terrible scarring, through no fault of the person who contracts, or is born with, the condition. Skin conditions are painful and embarrassing to live with, to say the very least. But, more than that – it is the visual effects of the conditions that may cause the most damage – contributing to significant self-esteem and confidence issues. The list of skin diseases, below, not only cause scarring or disfigurement, but are known to be fatal. While a person is fighting for their life against a skin disease – oftentimes they are subjected to ridicule, stares, treated like a social pariah, shunned completely or worse…treated like they are, somehow, responsible for the condition, themselves.
Notably, while researching this, I found it easy to compile the list – but, also found very little information regarding free, or reduced-cost scar removal treatments, or charities to help these people. It seems that the brunt of the treatment is mainly concentrated on saving their ‘lives’…if you could call it that – because, it doesn’t seem like much of a ‘life’, in many cases.
Reading through the blog sites was heartbreaking. Many victims discussed how doctors ‘rolled their eyes’ (how mean!) or otherwise ‘pooh-poohed’ their scars. Most of the patients had lost their careers and social lives, already – and those who found doctors willing to discuss their scars – or the pain, humiliation, and depression caused by them – also wanted exorbitant amounts to ‘start to work on them’. It was hard to believe that in an age where plastic surgery and cosmetic procedures are so commonplace – when it comes to ‘optional surgeries’, such as new breasts, bigger buttocks, noses, ears and tummy tucks; there is so little sympathy for those who have been disfigured by skin disease – which is certainly NOT optional.
Understandably, there are programs for acid burn victims, soldiers, cleft palates, certain reconstructive surgeries, face replacements, breast scars and PIP implant replacements – as there should be – but, unless it just isn’t highly publicized, there didn’t really seem to be any for people afflicted with deadly skin diseases.
The closest I came to finding an answer was a kindly dermatologist from Virginia Beach, who had answered the public internet plea of someone asking about free / reduced rate scar removal:
“Many locales have free medical clinics. I have volunteered in our two local clinics Chesapeake Care and Beach Clinic. While we did not do those procedures in the clinics we had plastic surgeons who were kind enough to donate their expertise. Both clinics would qualify the patients.
Residencies often work on a sliding scale. Those who were poor would receive their care for free while others would pay commensurate with their earnings. Often the procedure is performed by a resident, but an attending (experienced) physician would oversee the operation.”
Arnold R. Oppenheim, MD Virginia Beach Dermatologist
Okay…His answer was somewhat heartening. Surely, there must be programs. Perhaps it’s just a matter of getting the word out?
Here is the list of fatal / potentially fatal Skin diseases, compiled by Brainz.org:
1. Harlequin Ichthyosis. This skin disease afflicts newborn babies. It is a rare skin disease, believed to be caused by a gene mutation, which usually results in death within two days from birth. Harlequin Ichthyosis or HI causes the skin to dry out and form hard plaques shaped like diamonds. When the baby is born, the infant appears to be wearing a coat of armor. The condition severely restricts the newborn’s movements.
HI causes complications which are attributed to the newborns deaths. The babies experience feeding problems. These infants are also susceptible to both respiratory diseases and bacterial infections. Fortunately, the level of care has improved substantially which in turn has increased the survival rate for babies born with this devastating skin disease.
2. Epidermolysis Bullosa. Epidermolysis Bullosa is a group of hereditary skin diseases. There are three major types with several subsets. This skin disease has a range of severity. The skin disease causes the skin to blister with only a light touch. Individuals with more severe cases of Epidermolysis Bullosa will suffer with blistering of the mouth and esophagus too. Some types of this disease can cause the toes and fingers to fuse giving the appearance of webbing. Severe scarring is another effect.
There is no cure for this deadly skin disease. Victims of the skin condition have to endure various `courses of treatment, dependent on the severity of their condition. Some afflicted with this skin disease must obtain food through a feeding tube to prevent distress to the esophagus. Daily bleach baths are also necessary. Wound care is especially important to prevent infections. Surgeries are often performed to dilate the esophagus and to remove the scar tissue from the blistering.
3. Ehlers-Danlos Syndrome. Ehlers-Danlos Syndrome is a hereditary condition. It is caused by abnormalities in the collagen. This skin disease causes the skin to be extremely stretchy (hyper elasticity) and lax. Persons afflicted with Ehlers- Danlos Syndrome will also suffer with tissue weakness and easy bruising. Weak joints are also characteristic of this skin disease.
As with other skin diseases, the severity of the symptoms experienced by an individual afflicted with Ehlers-Danlos Syndrome depends on the type the person has. Some types of this disease will cause hemorrhaging and can result in the rupturing of arteries. An occurrence of this type will result in the person’s death.
4. Methicillin-resistant Staphylococcus aureus (AKA MRSA): MRSA is labeled the “super bug”. This potentially deadly skin infection begins as small red bumps. The bumps look similar to pimples or bug bites. These small bumps evolve into deep and painful abscesses. The bacteria are confined into the skin but can gain access into the body. Once in the body, MRSA causes infections in the blood, heart, lungs, bones, and joints.
Treatment options for MRSA include surgery and certain antibiotics. Surgery is performed to drain the wounds that become open abscesses and place the person at risk for life threatening infections. MRSA is resistant to almost all antibiotics. The bacteria have adapted defenses to combat what was once a lethal toxin to the infection. Only two antibiotics are strong enough to combat MRSA, vancomycin and linezolid. The scarring is often severe and life-altering. Most MRSA Victims complain of constant pain and itching and complications from humidity, at the scar sites. MRSA is often received through a hospital or other community-based location, such as: schools, a workplace, medical facilities or public areas.
5. Toxic Epidermal Necrolysis (AKA TEN): TEN is identified as a severe allergic reaction. The allergic reaction is usually in response to an infection or a medication. TEN causes flu-like symptoms over a several day period. Inflammation of the mucous membranes then occurs. A rash covers the skin, killing the uppermost layer of skin. The dead skin will shed. This occurs over 30% of the body and can be fatal. More than a quarter of the people afflicted with this painful condition die from some type of infection.
6. Basal cell carcinomas and Squamous cell carcinoma: Both of these skin diseases are forms of skin cancer. Basal cell carcinomas occur in the basal layer of skin. The cancer damages the tissue and causes scarring. This cancer doesn’t metastasize. Squamous cell carcinoma occurs in the squamous cells, hence the name. Squamous cells form the skin surrounding the internal organs. The cancer does metastasize. The cancer can spread to the organs. This type of cancer kills at least 2500 people in the US each year.
7. Scleroderma: Scleroderma causes abnormal growth of connective tissue. The skin hardens and tightens. Scar tissue then forms on the skin and other organs in the body. This condition is believed to be an autoimmune disease. The more severe forms of scleroderma can cause the lung and heart tissues to thicken also. When this occurs, death often results.
8. Pemphigus: Pemphigus is a group of chronic skin diseases. The skin disease is characterized by open sores caused by blisters. The sores can lead to infections. Severe cases of Pemphigus can cause lesions on the lungs and may lead to lung disease. This skin disease is thought to be an autoimmune disorder.
Pemphigus is treated with medications. Corticosteroids are most often prescribed. Treatments also include antibiotics or immunosuppressants. Some people require hospitalization to care for the wounds. Severe cases of Pemphigus can result in death.
9. Leishmaniasis: Leishmaniasis is reported to have afflicted around 12 million people and is considered to be endemic. The disease is transmitted by sand flies. When the sand fly bites, they transfer the skin disease. A sore usually appears on the bite and scars the skin. The disease then causes skin lesions and ulcers. Tissue damage occurs in the mouth and nose. Infections attack the liver, bone marrow, and spleen. Other organs can also be infected.
10. Herpes Gladiatorum or Scrumpox: Scrumpox is a skin disease caused by a strain of the herpes virus. The skin disease causes cold sores. Sore throats, blisters on the face, arms, neck, and legs. As with many of the other skin diseases, infection can be a complication of the blisters and sores. The infection can then lead to death. Scrumpox is spread through skin to skin contact and is extremely contagious.
These sound awful, even without the horrible scarring they must cause. We can only imagine that it takes all of the time, energy and money available…just to combat the disease itself. Surely, no one could feel that their main concern is ‘vanity’. They just want to feel ‘normal’ and accepted. Just as someone who faces any reconstruction understands…this isn’t a ‘new rack’ or a ‘cute bedonkadonk butt’ – this type of scar cuts straight to the soul.
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