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Living with focal segmental glomerulosclerosis (FSGS): Pascaline’s story

Pascaline’s life changed dramatically in 2014 when she was diagnosed with focal segmental glomerulosclerosis (FSGS) at the age of just 27. Since then, she has faced many challenges brought by her disease, including several hospital stays. A relapse in 2019 took her close to the point of needing dialysis. Now in partial remission, Pascaline shares some of her experiences to help raise awareness of some of the issues around glomerular diseases

A life-changing diagnosis

Pascaline, 34, from Brittany in France, was living and working in Germany as a marketing project manager when she started experiencing unexplained health issues towards the end of 2014. She had oedema (a build-up of fluid) and some weight gain, which was particularly confusing because she had been working out at the gym. “It was getting worse and worse—my face was swelling, my eyes, my feet… I bought some new shoes and then a few weeks later they were too small already.”

Returning home at Christmas time, Pascaline visited her doctor, who tested her and found high levels of protein in her urine (proteinuria). Pascaline was then referred for a kidney biopsy, which brought a formal diagnosis of FSGS at the end of January 2015.

Pascaline’s diagnosis—with a disease she had never even heard of—shook her to the core, and although the doctor giving the diagnosis explained it kindly and patiently, she couldn’t take any of the information in. Fortunately, her mother was also there taking notes and was able to relay everything to her later. At that point, Pascaline had no grasp of the seriousness of FSGS and certainly did not foresee the repercussions it would have on every aspect of her life.

Having been prescribed medication and told to follow a no-salt, no-sugar diet, Pascaline returned to Germany to resume her life there. Unfortunately, the disease and the medication she was taking made her feel extremely tired and she needed to take time off work, which soured her relationship with her employer. Feeling absolutely exhausted, Pascaline decided to return to France and look for new employment once she was able to do so.

After several months, Pascaline was able to begin working towards her dream of starting her own business and opening a chain of restaurants.

When her condition relapsed later, Pascaline had no choice but to abandon her project. Instead, in 2017, she decided to qualify as a teacher, a job she thought would bring job satisfaction and job security if her health declined again.

The journey towards that ambition has been a long and difficult one, interrupted by relapses in her condition, disturbed by COVID-19 and complicated by her treatment regimen, as well.

The true meaning of tiredness

The tiredness that may be accompany a medical condition is often difficult for people in good health to understand, Pascaline says. She believes that the spoon theory is a good way to explain the reality of chronic fatigue.

“Let’s say that at the beginning of the day you have 12 spoons. The spoons are the equivalent of your energy, and every time you do something it costs a spoon. So, for example, there are days when taking a shower is only one spoon, but there are also days when it’s nine spoons.”

“There are some days when everything seems to be going great. And then the next day, you don’t know why you can’t even get out of bed. Even taking a shower is exhausting.”

“Another way I try to explain it is to say it’s like someone sucking my energy. I feel like I’m hot and cold at the same time and I don’t have the juice to do anything any more, so I just have to go and lie down.”

People can’t always see tiredness but that doesn’t mean it isn’t there. Pascaline missed work for nine months, not from choice but because she was in and out of hospital all of the time. Her condition was so serious that her doctor would not let her go back to work even though she wanted to.

“Sometimes people think that you just stop working because you’re lazy or you just don’t want to bother,” she says.

Relapse and remission

Pascaline has become accustomed to frequent hospital trips since her diagnosis, and she is grateful for the quality of care that she receives. Going for regular check-ups became part of her routine soon after diagnosis—she jokingly told her doctor that she saw him more than she saw her friends.

In November 2019, Pascaline had completed her academic training to become a teacher and was working in a school to become fully qualified. Unfortunately, her condition worsened at this critical point.

“I was holding on till the end of the school year to become a permanent teacher, but then towards the end of the school year, everything started to become very bad.”

Pascaline’s busy timetable in the school left her no time to recuperate, and when she next went to the hospital, her doctor told her that she would need to stay in overnight. One night turned to two, then three and then a week. “Then they just stopped telling me when I was going to get out.”

After the first week, each day seemed like an age to Pascaline. Her tiredness meant that all she could do was lie there with nothing to do. Even reading was too hard for her for much of her time there. “I felt trapped,” she says. “When you do nothing for the day, it has a very big impact on your mental health… It was a nightmare.”

This misery of attending hospital for a check-up but then having to stay for so long has had a traumatising effect on Pascaline. When she was next told that she would need to stay overnight, on Christmas Eve 2021, she simply could not bring herself to do so.

The relapsing and remitting nature of FSGS has given Pascaline an insight into how employers in the private and public sector respond to the needs of people with a chronic disease. Pascaline is grateful for the support of her colleagues, past and present, and especially for the flexibility that teaching gives her to attend hospital appointments. However, she feels that employers in general need to think more carefully about the needs of people with chronic illnesses and accommodate their needs better. That might mean facilitating attendance at hospital appointments (rather than making people take days off) or allowing changes to working patterns, according to the stage of their disease.

Treatment burden

“I take about 25 pills every day and I have a little pill box where I put them every day… I feel like I’m 90!”

Taking her medication five times a day and juggling medical appointments with her nephrologist, physiotherapist, psychologist and general practitioner carries a substantial mental load, contributing to Pascaline’s emotional and physical fatigue, which is always there at varying levels.

Pascaline could never have imagined that she would need to take so many pills at such an early age. The quantity itself may be startling, but she says that people often don’t realise how far-reaching the side effects can be.

Pascaline has been told that a pregnancy would be very risky for her and for the child, because of the condition of her kidneys and because of the medication she needs to take. Hearing that has been one of the hardest things for her to come to terms with.

“I take corticosteroids and immunosuppressive drugs, and I also have chemo from time to time. That’s the basics of the treatment, and then I have more meds to control the side effects of those meds.” Pascaline requires anti-reflux medication to manage the side-effects of the steroids and she also needs extra vitamins to replace those that are passing into her urine rather than staying in her blood. 

Above all, though, “the difficulty with the meds is that they bring you even more exhaustion”, she says of her own experience.

Additionally, despite her carefully controlled diet, Pascaline developed diabetes when she was taking high doses of the steroids—“that was no fun either”, she says.

Pascaline has found that the immunosuppressive drugs she takes have made her more vulnerable to infection than other people. On one occasion, it took her six months to recover from a mild case of food poisoning.

“Sometimes you get small viruses. You don’t have many symptoms, but you feel tired. You have a runny nose, and it’s much more exhausting for you than for other people.”

Pascaline was able to travel to Venice in August 2022 for a holiday. It was an enjoyable trip, but it was also so exhausting that she spent most of the week that followed sleeping or resting. Nowadays, Pascaline’s trips need to be planned carefully with plenty of time for recuperation built in.

“It is still difficult to accept that I have to go more slowly at times, but my body quickly reminds me of my limits.”

Some additional problems brought by Pascaline’s disease and by her treatment include pain when she is standing, weight gain, increased hair growth, muscle wasting, cramps and involuntary contractions in her limbs, tremors, insomnia, nocturnal diuresis and an altered mental state that can make her confused, agitated or irritable, for example. This is not an exhaustive list, she says.

Peer support

Pascaline says that she has been well supported by the psychologist at the nephrology department in the hospital where she is treated. This has helped her to better understand her feelings towards FSGS, but she has also found it invaluable to seek out connections with other patients affected by kidney disease.

Her first introduction was through NephCure, a US-based organisation for people affected by rare, protein-spilling kidney diseases. It put her in touch with somebody else with the condition, who happened to be a teacher too, which gave Pascaline a useful perspective on living with FSGS—especially given the high levels of energy a teacher needs to bring to the classroom every day.

Having benefited from this experience, Pascaline then joined AMSN, a French association for people with nephrotic syndrome and their families, and several Facebook groups. Some were specifically for FSGS patients, while some were for people with other kidney diseases.

With the FSGS community being quite small, she has found these connections with others to be a lifeline, especially during her relapses. She is conscious, however, that they are usually English language groups, which could be a barrier for many patients.

“There were times when I was really not feeling good: I felt like it was not possible to get better. To see that some other people did actually get better was quite inspiring—even if at times I was jealous to see other people getting better while I wasn’t.”

During Pascaline’s relapse in 2019, the high doses of her corticosteroid treatment made Pascaline “shut down completely… there were so many side effects. It’s quite difficult psychologically because it makes you get better, but at the same time, it makes you get worse. I remember the last time my doctor told me that I would have to take high doses, I just started crying because I really did not want to.”

Discussing such trying situations with other people is extremely helpful, she says.

“I think it gives you hope, it gives you a perspective, and those things are very important.

“Also, by giving back your experience as well, you help other people, and that feels good as well—to share what you went through and to tell people that you can actually get better.

“When you discuss FSGS with other people, you don’t feel alone any more. And also, in a bizarre way, you feel kind of more normal.”

“Sometimes, when you have side effects, you discuss them with your doctor, but it’s not in the textbook, so they don’t know about it. Discussing them with other people who’ve experienced the same things makes you say, ‘Okay, so I’m not going crazy, this is happening, it’s not something I’m inventing.’ And that’s very comforting.”

Pascaline has gained a great deal from her involvement with these groups, but she warns people that there is also the risk of finding misinformation. For example, if a group is adhering to a particular diet, check that the advice has a scientific foundation, she says.

Hopes for the future

After all the interruptions brought by FSGS and COVID-19, Pascaline is looking forward to returning to the classroom full time this year. She says that her biggest hope is to remain in remission, as she is now, and to avoid dialysis “for a very long time—it’s not something I look forward to…” She adds that “a specific drug for FSGS would be great too”.

She also hopes to see doctors listening carefully to patients, rather than relying solely on their textbooks, as can sometimes be the case, she says. Although her relationship with her current medical team is very good, she is aware that not all doctors have developed the confidence to listen so well.

“The patient should be seen not only as a patient but as a human, and their perspective should be taken into account at all points during their care.

“When you feel understood, you want to take an active part in your treatment and things like that. Sometimes you share things that you think are side effects or consequences from the disease or the medications; it’s not in the textbook, but you’re still experiencing it.”

Pascaline knows that the future for her is somewhat uncertain, but she also knows that good and bad can arise from any situation. For instance, when she looks back on her own experiences, she recognises the positives that have followed her diagnosis: “It makes you see who is really there for you and what your support system is. I think it has made me more understanding of other people and more patient and tolerant.”

Date of preparation October 2022 – UK-NA-2200159

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