A personal description of Systemic Sclerosis, including a woman´s particular case.

1. Understanding the brain: The
neurobiology of everyday life
The university of Chicago
Ian Daniel Sánchez
Systemic Sclerosis

2. What is SS (Systemic Sclerosis)?
• Systemic Sclerosis (aka Scleroderma) is an autoimmune disease
affecting the skin and other organs of the body, meaning that the
body’s immune system is causing inflammation and other
abnormalities in these tissues.
• The main finding in scleroderma is thickening and tightening of the
skin and inflammation and scarring of many body parts, leading to
problems in the lungs, kidneys, heart, intestinal system and other
areas.

3. Case of study
• A friend´s aunt suffers from SS since 5 years ago, so I decided to ask a
few questions of what she knew about her illness, how she feels and
what the complications in her everyday were.
• She asked me to keep her privacy safe, so I will not refer to her by
name, I´ll just call her “she”, and that´s why none photography shows
her or her illness.

4. Things to know before
starting
• Systemic Sclerosis is NOT contagious
• SS is far more common in women
• The main reason is nowadays unknown.
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5. What she feels
Before having been diagnosed with SS, it is very difficult to realize you
have this kind of chronic illness. Diagnosis can be very hard. There are
no blood or any other tests that can say for sure that you have
scleroderma.
She started noticing a very uncommon change of color in her hands
and her skin started to peel at her fingers. As you may think, this is not
considered as a problem by most people.
When she went to a doctor it was unrecognizable that she had SS, and
for that reason she didn´t know the fact until months after her first
visit.

6. It is always tough to know you are affected by something like that, so
she decided not to tell her family.
Later, as you may guess, she got worse and a few people around her
knew what was happening even when she tried to hide it for a long
time, because she doesn´t like to be treated like an ill person, that´s the
reason why, in her own words said: “my mother doesn´t even know”.
The symptom that has treated her the worse is the tiring feeling. She
always feels tired, and her muscles do not respond as she would want
them to do. Even though SS affects mostly the skin, this is not the case,
and it could be because she has been treated for four years now.

7. She told me that she had changed the treatment a few times, because
in a way or another, it no longer made effect on her.
“I changed the treatment recently, because the other ones did not
make me feel better. It is very hard to take pills and having the feeling
of not getting any better. Despite that, when I forgot or I decide not to
take the medicine, I feel very bad, way worse, so tired and weak. So I
must take it, even when it doesn´t make me feel better”.
She also said sometimes she doesn´t feel comfortable with herself, she
feels nervous and start sweating out of nothing or she feels under
pressure when there´s nothing to worry about.
She is now under control and the illness is not getting worse, but it is
well known this is a slow process, and it can, and surely it will get worse
in the future.

8. She is now under control and the illness is not getting worse, but it is
well known this is a slow process, and it can, and surely it will get worse
in the future.
As I can see, she´s more affected emotionally, and it is not her fault,
because having chronic and uncurable diseases have a hard impact in
people´s attitude.
My friend´s aunt is now living under treatment for life, with stress and
fatigue most of the time, being cared by a familiar doctor.
Muscle contraction due to SS

9. What is wrong?
Unfortunately, as I said before, the main factor
that triggers SS on a person is still unknown.
However, it is known that there are multiple
factors involving vascular dysfunction, immune
alteration, and overproduction of collagen,
leading to various manifestations of this disease.
There are also genetic, genre and age factors
that can lead to develop SS, but they are not
confirmed at all.
Many people shows physical or mental fatigue

10. Even though there is no neurological studied reason in the
development of this suffering, there are serious repercussions al
around the body, including the nervous system and our own emotions.
It is important to mention that neurologic signs and symptoms occur in
any systemic illness either due to direct involvement of the nervous
system by the specific disease, or indirectly when the disease affects
other organs or systems in the body that unintendedly affect nervous
system function.
There is a series of patterns that have been found in SS patients which I
am going to list here according to a case report written in 1990 by
Wahaj Ahmad.

11. Neurological problems list
• 1. Episodic unilateral sensory and/ or motor symptoms
• 2. Episodic vertigo and ataxia
• 3. Episodic psychiatric symptoms
• 4. Mental retardation
• 5. Nystagmus
• 6. Trigeminal neuralgia/neuropathy
• 7. Diminution or loss of deep tendon jerks
• 8. Generalized weakness and wasting of muscles
• 9. Seizures

12. These symptoms will vary in all cases, as it is in a lot of illnesses.
The woman I met shows primarily a high premature wear in her muscles and
joint muscles, which prevents her from doing effort with her own body. She
also feels mentally tired and weak, but she has not shown worrying mental
problems yet.
The peripheral nervous system is highly compromised in people like her due
to the lack of movement or control of movement.
SS may affect axons involved in motor neurons, maybe for a progressive lack
of myelin. It also may affect our own homeostasis, causing this sensation of a
non healthy body at all times, including the sweaty conditions.
Muscle fibers are obviously not working, its recruitment has become very
limited and all kind of movement, form reflexes to actions are compromised.
It also has an adverse effect on the neocortex, affecting feelings and
emotions

13. It also might have an adverse effect on the abstract function of
neocortex or brainstem, affecting feelings and emotions and the way
we encourage situations of stress, leading to a bad attitude.
The final symptom I want to remark, is the affected enteric nervous
system. Even though the woman hasn´t told me anything about it, my
friend did. It is sometimes compromised, causing reflux or diarrhea,
and it is thought to be because the internal muscles and organs are also
weakened.
SS is still a field of ongoing research for the future, and hopefully in a
couple of years we get to understand all the physical and neurological
implications that this illness carries with it.

14. How the course helped me?
It is so fascinating how hard our brain works all the time, I never
imagined I was going to appreciate my own health, and how I can be
positive of understanding what happened if something ever gets wrong
in my nervous system or in the rest of my body.
But not only it is related with sickness and health, it is present when I
watch the sunset, when I tell a story, when I go to school and hug my
friends, when I eat and when I sleep. Now I can´t even look at a bird
without thinking of how my VOR is working to stare at it or how my
muscle fibers work when I exercise.
Sincerely, I took the course because I just wanted to know how it all
works inside of me, and maybe is one of the greatest experiences I´ve
had learning something. Everyone of us is a universe, and every time
we talk to someone, we watch inside of each one´s universe.

15. Resources
1. https://www.hss.edu/conditions_scleroderma-and-systemic-sclerosis-
overview.asp
2. https://www.ncbi.nlm.nih.gov/pubmed/8413372
3. https://pdfs.semanticscholar.org/3cd9/e41af0b07c4b6723327e93c0c59562a7
3679.pdf
4. https://www.ncbi.nlm.nih.gov/pubmed/23827688
5. https://www.medicalnewstoday.com/articles/176357.php
6. https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-
Conditions/Scleroderma