Testimony : The resilience of a young adult with lupus and Gougerot Sjögren's syndrome
Constance Grolleau-Foricheur, who was a student when the disease struck, shares her daily struggle and a message of hope and resilience. Read her story.
2022, onset of symptoms. Totally unknown and not hereditary.
I was far from home and had to wait for 8 hours in a small white room with no view of the outside world, with several different people coming and going. I was young, scared and alone. First I was diagnosed with hepatitis, then with mononucleosis, also known as kissing disease, and so on. I kept repeating my story and symptoms. I repeated my story and my symptoms to at least 3 different people a day, doctors, interns, ... In the end, after 5 days and many blood tests, I left with only Doliprane to relieve my pain.
As the weeks went by, the nights got shorter and shorter, and intense fatigue with seizures took over. So I went to another doctor. I had an MRI, my blood was taken again, and we found that my platelets were very low. But still no name to describe what I had.
Time passed and my days were endless, 1 paracetamol in the morning and another in the evening to ease the pain and sleep. Sometimes I slept almost a whole day and had mood swings which didn't help those around me. I managed to get through the year as best I could and spent the month of August studying my case with specific doctors.
The first conclusion was ITP. Immune Thrombocytopenic Purpura. This is an autoimmune disease. So we started a 15 day course of corticosteroids. This worked. After further clarification through blood tests and what my body could show us, we discovered that I had lupus.
I was far from home and had to wait for 8 hours in a small white room with no view of the outside world, with several different people coming and going. I was young, scared and alone. First I was diagnosed with hepatitis, then with mononucleosis, also known as kissing disease, and so on. I kept repeating my story and symptoms. I repeated my story and my symptoms to at least 3 different people a day, doctors, interns, ... In the end, after 5 days and many blood tests, I left with only Doliprane to relieve my pain.
As the weeks went by, the nights got shorter and shorter, and intense fatigue with seizures took over. So I went to another doctor. I had an MRI, my blood was taken again, and we found that my platelets were very low. But still no name to describe what I had.
Time passed and my days were endless, 1 paracetamol in the morning and another in the evening to ease the pain and sleep. Sometimes I slept almost a whole day and had mood swings which didn't help those around me. I managed to get through the year as best I could and spent the month of August studying my case with specific doctors.
The first conclusion was ITP. Immune Thrombocytopenic Purpura. This is an autoimmune disease. So we started a 15 day course of corticosteroids. This worked. After further clarification through blood tests and what my body could show us, we discovered that I had lupus.
Then I did some research of my own about lupus and what it means. It's a chronic autoimmune disease that can affect any part of the human body (skin, joints, and/or organs inside the body). For me, it's my platelets and my immune system with the white blood cells.
So I continued my course and moved on to the next year of my training. Until I had another relapse two months into school. So I came back home, had some tests and stayed in the hospital for almost a week. After a biopsy, we discovered that I also had Gougerot-Sjögren's syndrome. This is an autoimmune disease characterized by lymphoid infiltration of the salivary and lacrimal glands, responsible for dry mouth and eyes, and the production of various autoantibodies. Again, I stayed home for 1 month to undergo tests before returning to my studies.
I should also mention that I also suffer from Raynaud's syndrome. This is a vasomotor disorder caused by temporary constriction of blood vessels (vasoconstriction), which deprives the extremities of blood and oxygen. This abnormal, abrupt and temporary cessation of arterial circulation is responsible for the onset of symptoms. However, this syndrome is hereditary.
As the saying goes, never 2 without 3! Corticosteroids should not normally be taken every day. But we had no choice. So I took corticosteroids and Plaquenil every day for months.
I missed a lot of sleep because corticosteroids usually have an initial doping effect that fights fatigue. To give you an example, it's as if you've done 30 laps around the pool. Your heart beats a little bit faster, as if you've just run a marathon and you haven't run before.
After the corticosteroid taper, we decided to try a new technique. Rituximab infusions. Repeated infusions of rituximab can be given every six months, depending on response to treatment and disease progression. Each infusion session can last four to six hours.
I've been on this treatment ever since, along with Plaquenil and blood tests. I'm at the end of my course, and it's been pretty tough on my morale and physique, but I'm coming out of it braver and stronger than ever. I always want to surpass myself, to persevere and continue with my sports, even if they are risky, because I believe that even if I'm sick, I want to do what I want to do and look like a young adult who can do the same things as everyone else.
I'm also worried about the sun. My skin is extremely sensitive in both summer and winter. That's why I discovered KER SUN. I have to say that with the time I had in the hospital, I could do my shopping on the net! I always have my little navy jacket and gloves that I use whenever there's a small ray. It's really convenient and makes me look good. I can't wait to recommend it.
My solution is that even when all seems lost, take it with a smile and move on. I know this path isn't easy, and it may even torture your spirit. But tell yourself to never stop doing what you love. Even for an illness. Have fun and above all, love yourself - that's the most important thing!
Constance
So I continued my course and moved on to the next year of my training. Until I had another relapse two months into school. So I came back home, had some tests and stayed in the hospital for almost a week. After a biopsy, we discovered that I also had Gougerot-Sjögren's syndrome. This is an autoimmune disease characterized by lymphoid infiltration of the salivary and lacrimal glands, responsible for dry mouth and eyes, and the production of various autoantibodies. Again, I stayed home for 1 month to undergo tests before returning to my studies.
I should also mention that I also suffer from Raynaud's syndrome. This is a vasomotor disorder caused by temporary constriction of blood vessels (vasoconstriction), which deprives the extremities of blood and oxygen. This abnormal, abrupt and temporary cessation of arterial circulation is responsible for the onset of symptoms. However, this syndrome is hereditary.
As the saying goes, never 2 without 3! Corticosteroids should not normally be taken every day. But we had no choice. So I took corticosteroids and Plaquenil every day for months.
I missed a lot of sleep because corticosteroids usually have an initial doping effect that fights fatigue. To give you an example, it's as if you've done 30 laps around the pool. Your heart beats a little bit faster, as if you've just run a marathon and you haven't run before.
After the corticosteroid taper, we decided to try a new technique. Rituximab infusions. Repeated infusions of rituximab can be given every six months, depending on response to treatment and disease progression. Each infusion session can last four to six hours.
I've been on this treatment ever since, along with Plaquenil and blood tests. I'm at the end of my course, and it's been pretty tough on my morale and physique, but I'm coming out of it braver and stronger than ever. I always want to surpass myself, to persevere and continue with my sports, even if they are risky, because I believe that even if I'm sick, I want to do what I want to do and look like a young adult who can do the same things as everyone else.
I'm also worried about the sun. My skin is extremely sensitive in both summer and winter. That's why I discovered KER SUN. I have to say that with the time I had in the hospital, I could do my shopping on the net! I always have my little navy jacket and gloves that I use whenever there's a small ray. It's really convenient and makes me look good. I can't wait to recommend it.
My solution is that even when all seems lost, take it with a smile and move on. I know this path isn't easy, and it may even torture your spirit. But tell yourself to never stop doing what you love. Even for an illness. Have fun and above all, love yourself - that's the most important thing!
Constance
