My journey so far

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Dear gentle readers, I hope this blog finds you all well. I’m doing great, thank you. My quality of life has improved — I’m able to move and wake up every day with zero blisters. After two years, I’ve finally been off steroids for the last two months. I’ve been wearing nice clothes during my hospital reviews. I still have my bad days, but they don’t bother me anymore. My doctor, my well-wisher — specifically asked me to mention this, and I’m happily obligated to do so:                   “ I wore a nice dress today, and my doctor smiled at me." Yes , I wore a nice dress. I saw the smile reach his eyes, those fine lines creasing with warmth. The laughter filled the renovated room, adding the most beautiful touch to it.          YES ! My doctor was happy to see me, and we laughed at our silly jokes.               "I am a LIVING example that your patients are doing really well." My jour...
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What is Pemphigus vulgaris and uncommon symptoms

 Define: A rare autoimmune disease that is characterized by painful blisters and erosions on the skin, long term condition that causes the immune system to fight against the body’s own cells in the same way that it fights off invading germs.

 

Uncommon symptoms:

PV is more than just painful blisters and erosions; it is more than their assault on healthy cells and their capacity to absorb protein that is found between the patient's skin cells. 
  • Undergoing a significant life-changing event impacts not only the physical aspect but also the mental, emotional, and social aspects.
  • Despite consuming a high amount of protein in the diet, there is still a deficiency in protein levels, necessitating the administration of albumin and plasma protein transfusions.
  • Skin erosion can occur with minimal friction, making it uncomfortable to wear regular clothing as they adhere to the skin, causing a sensation akin to being pricked by hundreds of needles simultaneously.
  • Removing clothing stuck in the wound exacerbates the discomfort and widens the erosion with each instance.
  • Hair loss can lead to bald patches on the head, with yellow fluid oozing from wounds and causing hair to clump together.
  • Brittle and discolored nails may be a sign of an underlying issue.
  • Muscle weakness can also be a symptom that should not be ignored.
  • Swelling in the feet and fingers  
  • Common occurrence of crusting in the eyes and face  
  • Hearing issues, ear blisters, and persistent wounds  
  • Unpleasant body odor due to crusting wounds  
  • High risk of secondary infections leading to bad odor  
  • Immediate medical assistance required for worsening odor and fruity-smelling blister fluids filled with blood.

*images from personal records 
Pemphigus vulgaris signs and symptoms

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