The need for communication, especially in the isolation we live in due to the pandemic, motivated us to organize a virtual group in which we could share the issue of Histiocytosis in a psycho-emotional level.
The group is giving us the chance to share in our experience living with the disease and the knowledge we receive while walking in this path.
Our constant companion in this effort is Athina Berdebe, a psychotherapist that specialises on both adults and adolescents.
There are two groups. Adults and parents, that get together every two weeks.
If you are interested in participating, please contact our psychotherapist, Athena Berdempe.

Athina Berdebe
B.Sc, M.Sc
Psychotherapist
M: +30 6973822237

Below, a few words about our psychotherapist.
Athina Berdebe is a Mental Health Counselor, specialized in systemic/family therapy. She has a degree in Greek Philology and a post-graduate degree in Special Education from the National and Kapodistrian University of Athens. Following the completion of a three-year education in Systemic Consulting Psychology in the Centre of Applied Psychotherapy and Counselling, she was trained in Organizational Psychology and Cognitive-Behavioral Therapy in the National and Kapodistrian University of Athens. She is accredited with the Athenian Institute of Anthropos on Emotion-Focused Therapy (EFT).
She has also attended several seminars pertaining to Developmental disorders in the Autism spectrum and Asperger’s syndrome, children’s education, relations between parents and children, management of groups, as well as contemporary social phenomena affecting children and adolescents, such as aggressiveness, violence, bullying at school, addiction to the internet and cyberbullying.
Since 2013 she has been working as Human Resources manager and in parallel as a Mental Health Counselor for individuals and families. She has cooperated with the Interbalkan Centre for Business Development in experiential workshops for Self-Development and has worked as a volunteer in organizations supporting children and adolescents.

Athina Berdebe, B.Sc, M.Sc
Systemic Family Counsellor
Psychotherapist for Children and Adolescents
Μ: +30 6973822237

It all started from a persistent dry cough. A chest X-ray and a CAT scan were enough to reveal Langerhan histiocyte cells in my lungs. My pneumonologist, however, was not well acquainted with the disease. Thankfully, he referred me to Sotiria Hospital and to Dr. Toumpis, chair of the Sotiria 6th clinic in particular, who is a knowledgeable doctor and a superb person. I owe him a lot. After a series of further examinations my worst nightmare came true: I had eosinophilic granuloma.

For about a year I underwent cortisone treatment and my condition was stable. I was scared, confused, I didn’t know anything about my illness. I had already stopped working by that time and my mental state was quite negative. I felt it was all over. According to my doctor, the fact that I was already of a certain age, meant that the disease would progress slowly or even stop its progress altogether on its own. Admittedly this was quite encouraging. My family reacted naturally, not showing any grave signs of concern, and urged me to trust my doctors. I did not inform my friends or acquaintances about my condition as it was really difficult to talk about it.

A friend spoke to me about the Artemis Association and I got in touch with them right away. The Association’s doctors gave me a thorough brief on my condition and put me in touch with other patients who suffer from the same illness as I do. I got a lot of support from Artemis and, most importantly, I no longer felt alone.

It’s been 14 years now since that first CAT scan. I do regular bi-annual check-ups and I feel quite well.

I would like to say a big “Thank you” to the Artemis Association for their support and I hope they continue to operate the way they do despite any obstacles they may face. Histiocytic Disorders should not be classified as an “orphan” disease!

Barbara

When our son, Alexander-Stylianos was born and I held him for the first time, I instantly felt that something was a little off. It may have been just an instinct, but unfortunately my instinct came true.

He was a light baby and, after the first hematological exams, we discovered he had low white blood cell count and needed blood transplant. On the 8th day of his life, he was transferred to B’ critical care unit at Paidon Hagia Sophia Hospital. After numerous exams -all of which were in accordance with Kings College England- and after multiple doctor visits, we discovered he suffered from juvenile xanthogranuloma. He was instantly treated with chemotherapy, which lasted for six weeks. From the first couple of weeks the hepatosplenic syndrome ameliorated, ascites receded and bilirubin levels decreased. The very first day of treatment, Ms. Fofo Bellou, Irene’s mother, came to the hospital and brought information pamphlets as well as the Artemis Association brochure. I called them up immediately and spoke with the Association secretary Ms. Dora Moustaka.

Once the treatment was over, we took our baby home. He was three and a half months by then. A little while later, he started the second phase of chemotherapy treatment combined with cortisone treatment. When he was one year old, we did the last bone marrow scan and the result was great: total cure.

We were calm and optimistic from day one. We refused to listen to some doctors’ discouraging words and we continued to believe our son would make it through. We prayed with all our might. When Dr. Papadakis informed us he was completely cured, our joy and gratitude was immense.

Today, Alexander is 10 years old. He is healthy, happy and has many interests. He is a good student, he enjoys exercise, painting and music. He is particularly sensitive and caring towards children who are sick, injured, or in discomfort.

I would like to extend my deepest gratitude, thank and love towards the Kontoyiannis family and to all members of the Artemis Association for giving us courage and inspiration. I honestly hope all their aspirations come true. I would further like to express my respect and love towards the doctors who supported us with their knowledge and genuine concern. Dr. Kanavakis, Dr. Papadakis, Dr. Stefanakis, Dr. Koumenidou, Dr. Siokou, Dr. Papagaroufali, Dr. Fotopoulos, Dr. Kanaka, Dr. Dimitriadis and all the nurses and doctors who work at Paidon Hagia Sophia Hospital as well as Dr. Zellou and Dr. Liatsos.

We wish that progress continues to be made on research on Histiocytic Disorders and one day a cure is found. We wish that the miracle that we experienced with our son’s total cure comes true for all patients.

Theodora

I started feeling chest pains, in the early spring of 1994. The pains would come at dawn, like late-night visitors, and leave late in the morning. Each day the pains grew stronger until they became insufferable and, eventually, they reached the point where I was rushed to the hospital for an X-ray. Unfortunately, the doctor who saw me then was unfamiliar with Histiocytosis Disorders and did not diagnose me properly – he suggested they were chest pains related to ovulation. The next day I saw my gynecologist who said I was perfectly fine as far as OBGYN is concerned.

Time passed, but my chest pains didn’t. Eventually, I was rushed to the ER for a second time feeling ill and I was given strong pain killers as treatment. Since I didn’t see any signs of improvement, I started thinking my condition was psychosomatic so I consulted psychologists, acupuncturists and various alternative doctors seeking for a treatment to no avail. On the contrary, my right leg starting aching, an accompaniment to my chest pains.

Come July and, despite my health, I really needed to start working. I found a job as a waitress and my boss informed me that I needed to get medical insurance. Thus, I returned to the hospital with my spring of ’94 X-ray at hand. A doctor informed me at that point that I needed to be hospitalized but, since I still needed that job, I didn’t have the time. Instead of hospitalization, I began to visit the hospital on a daily basis to get checkups. After two failed bronchoscopies, I did a biopsy and discovered that I suffer from eosinophilic granuloma in the lungs.

Additionally, a scintigraphy showed that several bones in the chest and my right thigh had also been inflicted – precisely the areas where I felt pain. I started cortisone treatment, gained a lot of weight and my body got filled with stretch marks. I could no longer recognize myself. Emotionally I felt horrible because physically and aesthetically I felt bad so I secluded myself at home and refused to see or be seen by friends.

By spring of 1995, I finished the treatment and my aches stopped as did Histiocytosis. Fairly soon thereafter, I started losing the pounds I had gained before, I returned to work, and found my old routine habits.

However, in 1998, the aches reappeared, accompanied by intense coughing. I started cortisone treatment once again. In 2000 I started feeling headaches. Later on, my headaches were followed by a feeling of intense thirst, my period stopped, my breasts swell and started lactating! I visited an endocrinologist who, unfortunately, was also unfamiliar with Histiocytic Disorders so he did not help me with a treatment either.

Six months later and the only thing that had changed was another burden added to my pile of suffering: I needed to visit the bathroom every twenty minutes and kept feeling thirsty yet no amount of water sufficed! My doctor, Dr. Doris, suggested I visit another endocrinologist Dr. Polyzois Makras at the Geniko Kratiko Hospital, who in turn referred me to Dr. Grigoris Kaltas. Both doctors were fully informed on Histiocytosis and, miraculously, they prescribed an antidiuretic hormone treatment. The particular hormone allowed me to finally enjoy a full night sleep and not get up every twenty minutes for a bathroom run, which is what had been happening the past six months. I also had a brain MRI and discovered I had Histiocytic cells in the pituitary gland. I received the necessary treatment though and started feeling better.

Dr. Makras informed me about the Artemis Association, which I visited often. I met Ms. Dora Moustaka, the Association secretary, who informed me that I am not the only patient suffering from Histiocytosis. I learned about Mr. Kontoyiannis, the Association’s founder, but also about Eytychia, Ilias, Nicolas, Eleni, Sophia and more people who suffer from the same disease as I do. I no longer felt alone. I started feeling that there are people out there who can support and consult me. The Artemis Association was there for me. Six years went by until I realized I am not alone.

Moreover, the Artemis Association collaborates with other similar organizations globally who finance research towards the cure of Histiocytosis. The Artemis Association helps organize the “Nikolas Symposium” an annual think tank where doctors and experts from all over the world participate. They exchange their research, opinions and concerns. They share their discoveries and thoughts and each year marks a step closer to finding a cure.

In 2003 I started six chemotherapy sessions and I continue to this day with azathioprine and methotrexate. The last few years my condition has been stable. I take hormone substitutes and go on! I hope Histiocytosis does not reappear on other parts of my body but even if it does, I now know that there are great doctors out there, fully informed of the condition and capable of helping me.

I have been living with the Histiocytic Disorder for twenty-two years, I have learned to love myself, to enjoy each and every minute of my life, the big things, the small things, and to cherish the beauty of each day and of every person in my life.

Christina

It must have been May of 2011 when I felt pain on my forehead while washing my face. I didn’t really pay attention because the pain felt like an insect bite, something of little importance. In the middle of the summer, I got intense headaches, heavy migraines mostly in the afternoon hours and towards the end of the day. The “insect bite” spot had swollen a bit and I developed a small rash.

By early August, in the midst of summer vacation, my headaches would not go away. On the contrary, they developed stronger and lasted almost the entire day, getting worse by nighttime while the particular spot on my forehead became clearly visible and swollen. I went to a local clinic where I had an X-ray and I remember the doctors telling me to go to Athens and get it checked because they saw something like “air” in my forehead.

An MRI showed that my forehead bone was inflicted. Basically, there was a hole in my head and a tumor was growing through it, attached to my brain. I started researching what I could do, asking neurosurgeons mostly since it was clear I needed to be operated on. I visited a number of doctors and they all told me they cannot know what the tumor is until they remove it and perform a biopsy. At this point, I should also mention that although my condition was clearly critical, my reaction to what was happening was quite calm. I was almost indifferent. I could tell many jokes about my condition at the time but I understood the situation was not funny and that illnesses are not funny in general. Nonetheless, to me, it was an odd and funny time of my life.

Naturally, I knew what sort of operation I had to go through and I was informed on all its technical details. I chose the doctor that I felt suited me best (judging from the way we communicated) and, as it turned out, I didn’t make the wrong choice.

Even though I knew by August 20th what I needed to do, I underwent the operation on September 22nd. The surgery lasted for five and a half hours and it was a serious one because the tumor that infiltrated the dura wouldn’t come off. They added material to my dura and to the hole in my head. For some reason, I was never afraid the operation would go wrong. When I woke up, I had so much energy I kept talking non-stop as if I hadn’t seen anyone for years. The next day I got up and by noon I thought there was no reason to stay in the hospital any longer. They insisted on keeping me until the weekend, but by Monday morning I was out of there.

When the results of the biopsy came out and my illness was identified as Histiocytic Disorder, I started research on the particular disease. That’s when I got in touch with the Artemis Association. I would like to mention that the illness is not well-known in the medical community. Consider, for instance, that when I was getting tested, I spoke with a hematologist who did not even know histiocytosis existed. If you ask me, I’d say it makes sense. I discovered the Artemis Association online, while still trying to find out more about my disorder, and I distinctly remember speaking with Dora who gave me all the information she had. I started visiting doctors who lead research on Histiocytic Disorders and, to my surprise, I discovered how impactful the Association has been in the field. The Artemis Association is the leading source of research, of medical protocols, as well as a global communication resource for all matters concerning Histiocytic Disorders. Quite an accomplishment considering it’s all done on a private initiative and it has no government support. All doctors who contribute to this effort are excellent, they genuinely care about patients and the particular illness and they strive to bring results for us, quite successfully I believe.

Patients need to get tested as thoroughly and as frequently as their doctors instruct them to. As a patient, I suggest you listen to your medical practitioners since they know more about your condition than you. Personally, I am not a role-model patient since I rarely follow my doctor’s instructions. I consider the illness to be a “controllable” one, especially if you do as you are told by your medical practitioners, unless you are really unlucky. I think psychology plays an important role in how you deal with the illness. It is something you need to live with your entire life, instead of pretending it doesn’t exist. I may not follow the recommended path when facing the illness but I am also probably not the best patient sample out there. I have been lucky thus far, but I am certain my luck won’t last forever.

Up until today the disease has not reappeared, though I know it often does in many ways.

I would like to say a big thank you to Mr. Kontoyiannis and his family, without whom all of what you will learn in due time and which will help you as they helped me and many others, would not have been possible. Lastly, I would like to say that although my reasoning is impartial, my testimony is quite self-centered; then again isn’t that the case with this illness?

A. K

Our story began when our first son turned 7 years old. The initial signs were an acute sudden pain in his neck and difficulty in movement. We visited our pediatrician who said it was some sort of torticollis (spasm of the neck) which will pass on its own. Less than a month passed and the same thing happened again. My kid’s neck hurt and he couldn’t move his head easily. This time our pediatrician said we should go to the hospital to check it further.

The next day, with his help, we went to Paidon Hospital and the kid was examined by orthopedics who conducted X-Rays and an MRI scan. They concluded that our son suffered from eosinophilic granuloma in the Α4 vertebra. We needed to conduct a biopsy in order to fully diagnose his condition and proceed with a treatment. From the next day onwards, our struggle began. We started consulting more doctors, trying to figure out how to get a sample for biopsy, what this involved, and how dangerous it was for the child. Our minds were occupied with many thoughts and finding a team of doctors to agree to perform the operation was very difficult.

The biopsy was conducted by radiologists under full anesthesia. We found a team of doctors who could perform the biopsy at a clinic. At first, they did not want to do it either, but after seeing our insistence and how quickly the illness deteriorated our son’s health, they agreed. They did warn us though that there was a great chance the biopsy would not show anything because the sample would be too small and because of the soft cells that had developed around the inflicted area. Nonetheless, we decided to move on with the biopsy. We thought that if it didn’t show any results, we would proceed with our final option: to leave Greece, remove a larger sample via surgery and then do a second biopsy.

At that point, our kid was being monitored by Dr. Kosmidi, head of the oncological department, and Dr. Pistevos, head of the orthopedic department at the Paidon Hospital, Panagiotis and Aglaia Kyriakou.

The biopsy confirmed that our son suffered from Histiocytic Disorders and we began therapy using chemotherapy and cortisone treatment. This lasted for about six months.

It was difficult but not like I had imagined. Perhaps it was my bad emotional state. Thankfully, his hair did not fall off but he did gain weight from the cortisone, so much so that he couldn’t even play with his toys. The worst part was that he had to wear a brace to hold his head still and restrict him from moving in a way that could damage his neck.

At some point Dr. Kosmidi talked to us about the Artemis Association. I decided to get in touch with them at a later point though because back then I didn’t have the courage to do even that.

When the therapy ended and time passed by, we had to find a way to continue living on as a family. This was particularly important for the child who had been through such an ordeal at a tender age.

Now, 15 years later, I think I was not strong enough to help my son, my husband and my second child who was only 5 years old at that time. Of course, I know that it is not easy to act properly when facing such a situation. Communicating with the Artemis Association would have certainly helped during those therapy days because they are a source of information and support acting alongside our medical practitioners.

As for our son, today he is 22 years old and completely healthy. The illness has not reappeared since. Its source was small and unique, which doctors say is positive. Now he gets examined by the Association doctors, Dr. Kaltsas and Dr. Makras and we thank them for this.

Dimitra

I remember riding my bike with my parents on a sunny day in February 2005. I was 10 years old at the time. That was the last day I’d ride a bike for the next five years. It started with an intense pain in the back of my head. Everybody attributed it to over-exercising – at the time I used to train three times a week and do the long jump. We decided that I skip practice for a few days to recover. The pain, however, did not go away. On the contrary, it got worse. So, we started visiting doctors to figure out what the problem was. At first, we went to my pediatrician, then to an orthopedist, an otolaryngologist, a neurologist and a physical therapist. They couldn’t come to a valid conclusion nor tell what was causing my pain. In the meantime, and thanks to my farther’s persistence, I underwent various specialized examinations that showed a tumor in my head. Upon seeing it, the doctors I had previously visited, admitted never having seen anything alike before.

We sent my test results to a number of clinics abroad and visited a pediatric oncologist in Cyprus, but, to no avail. The doctors couldn’t reach a unanimous conclusion. We had so many different diagnoses that confused us rather than helping us. We didn’t know what to do next. Eventually, we decided to trust the medical clinic at Great Ormond Street Hospital in London, UK. There I was assigned to a team of doctors headed by an oncologist. The diagnosis was Histiocytosis LCH – something we had never heard of before. I started treatment which lasted for about a year. During the first five months, my entire family moved to London.

It was truly a difficult time for all of us. I was afflicted with an unknown illness – an “orphan disease” as doctors called it. Luckily, our oncologist was very encouraging. If you are reading this testimonial and you have attended any of the conferences organized by the Nikolas Symposium, you must have met her. I am referring to Dr. Penelope Brock, a sweet and kind person and a brilliant scientist.

I recall crossing the street, walking towards the hospital and seeing a new imposing building under construction. I was wondering what that section would be and my parents telling me it would host the new UCL University Hospital. I said to them that this where I wanted to study when I grew up and them answering the obvious: “Get well first and you can study whatever you want, wherever you want”. I remember telling that to my doctor as well, when she announced that she would be presenting my case in a medical conference.

I kept in touch with my doctor and her medical team for the next four years. Now, thank God, I am well and I can share my story with you.

Time passed and about a year ago, on October 2012, I decided to study medicine. I submitted my application to UCL hoping to be admitted and study at that particular building I saw under construction back when I was sick. On March 2013, I was called for an interview. Towards the end of my interview, one of the three doctors of the committee asked “What sort of relationship does Greece have with Histiocytosis Disorders?” I had the chance to speak about the Nikolas Symposium and the Artemis Association. While sharing my experience, the doctor interrupted me and spoke to the other two members of the committee. He said: “Gentlemen, you may not know this, but I am very familiar with the Nikolas Symposium, the Artemis Association and their work.”

Today, I am writing this letter from the dorms of UCL. I am a student at the medical school and, God permitting, I will be here for the next six years. I moved to London on September 22nd and during my first days in the city, I visited GOSH and asked to see my former doctor. She was very pleased to see me and tears filled her eyes when I told her I was there not as a patient but a student. I was sad to hear she was soon to retire as I had dreamt of working next to her one day. I did promise her, though, that I would try to give my future patients what she so generously offered me: love, hope and cure.

Anna

I was born with natural birth on October 13th 1986 in Krikeli, Agrinio. Aside from a week I spent in an incubator for jaundice, all was good. Back then we lived in Agrinio with my parents and elder sister.

Seven months later, I got a persistent fever and cough. That is when it all started. After many visits to different doctors, we ended up in a hospital in Patra. The doctors couldn’t help me as they had no clear image of what was wrong. They gave me medication, antibiotics and injections that proved unsuitable for my condition. Instead of helping me, they negatively affected me. I lost way too much weight and got a skin rash on my back and genitals. All this made my condition critical. My parents were so afraid, they rushed to baptize me at the hospital’s small church, Saint Charalambos. The night of my christening I was rushed to Agia Sofia hospital in Athens. The doctors at Patra had discovered a shadow, which they considered dangerous, and sent me to Athens where I would undergo surgery of the thymus gland. The next morning, while waiting to go into surgery, the doctors did not show up. They disagreed on my operation because my medical test results didn’t clearly call for surgery. Thus, I had to undergo new examinations which lasted for an additional month. The results showed that I suffered from Langerhans Histiocytosis (LCH).

After hospital discharge we returned to our beloved home, but a few days later, a new problem appeared. This time my left eye started to swell (exophthalmos). So, once again, we started seeing doctors and eventually returned to Athens, to the Children’s Hospital where I stayed for a long time with my mother, father and sister on my side. The doctors discovered a lump in my head and in the cervical spine, as well as lesions of the vertebrae, which led to a new series of examinations and a biopsy of my right thigh. I was under treatment but, still, my eye could not shut, my spleen and thymus gland were swollen and my liver was inflamed. Additional findings included fractures in my pelvis and I1 vertebra as well as the 5th lumbar spine. Doctors said that I had to refrain from any movement for about a month and wear a cast. When I took off the cast, I fell into a coma for 24 hours. Luckily, I started recovering on my own. The swelling on my eye decreased, I managed to shut it, and my body started waking up. Dr. Makaronis, who was treating me, suggested we visit a medical team in the UK. They gave me additional treatment and gradually I gathered strength and regained my health. I was 2.5 years old at the time. I started walking and underwent chemotherapy for about a month. When I was 3 years old, the health committee of Aetolia-Acarnania granted me a disability percentage of 67%. Around that time, I started developing diabetes insipidus symptoms including intense thirst and a constant need to urinate. I was placed on a medical treatment fairly quickly. Time went by and when I turned 4 the doctors decreased my cortisone intake and various other drugs. About a year later my younger sister was born. When I went to third grade of elementary school, we moved to Athens. It was easier this way since twice a year I had to be there to undergo medical examinations. Those years I only received mild treatment as my condition was pretty stable.

However, when I went to high school my condition deteriorated once again. My bones and joins ached, I felt dizzy and I got tired easily. The doctors initially didn’t pay much attention to my complaints but I insisted and finally they conducted more tests which showed I had hypothyroidism and iron deficiency anemia. I was over 16 and could longer go to the Children’s Hospital. I had to find a new hospital and new doctors hoping they would care as much about my illness as my previous doctors did back when I was a child. This turned out to be a very difficult task. We kept searching for two years for doctors in vain.

Finally, Dr. Pandazi, an endocrinologist at Alexandra Hospital showed interest in my case. We found out that I had osteoporosis which caused premature menopause and an eye condition. I was 18 years old when I started researching about my condition. I was trying to figure out if the medical regimen I was following sufficed or not.

I finished my university degree in radiology and joined Attiko Hospital where I work to this day. In Attiko Hospital I had the privilege of meeting some distinguished people and doctors who supported me. I found out that I have articular lesions that cause my tendonitis as well as hyperlordosis. I started wearing a cast and discovered that I suffer from disk disease in the fourth and fifth lumbar vertebrae and the 11th and 12th thoracic vertebrae and that I have osteophytes in my spine. I have also developed ovarian cysts and cysts on my bones and my sense of smell due has been affected by the medication I take. Bottom line, my bones are so fragile that I need to watch out for fractures. An orthopedist at Attiko Hospital, Dr. Stathopoulos, urged me to get in touch with the Association. As soon as I discovered the Artemis Association online, I wanted to find out more information.

I am now being treated by Dr. Makras, an endocrinologist, and I have changed treatment. I have finally found a medical team that cares about me and doctors that have in-depth knowledge of my condition and can guide me properly though my treatment. I feel happy to have found the Artemis Association and, through them, people that are like me and can understand what I’ve been through all these years.

I now live my life as normal as possible and fill my days with my hobbies; swimming and cooking! I feel happy and strong.

Thank you all very much,

Stefania

My second son, Thanos, was born in October 1989. You have all felt the bliss and happiness of becoming a mother of father.

A year later, histiocytosis, this rare and unknown illness, struck our home. My world fell apart. My daily routine consisted of desperation, agony, fear, pain, doctor visits and hospitalization. Some of you may have been through a similar emotional storm. Some, may be going through it right now.

The sole source of light during these dark days was meeting Mr. Apostolos Kontoyannis. His son, Nicolas, suffered from histiocytosis for twelve years and Apostolos knew this illness better than anyone else. I joined the Artemis Association right away. It was a small group back then, but it was my only source of hope and comfort. Apostolos’ persistence in finding a cure gave us all the courage to stand by his side and help as much as possible in this difficult task.

Twenty years later

Thanos grew up and with him grew the Artemis Association. Our small team that once consistent of a handful of people now counts many members and friends. Thanks to sponsors and supporters, it has made great progress and has accomplished many of its goals.

I want to especially thank the Association secretary Ms. Dora Moustaka, who has been the heart and soul of the Association all these years and without who many things would not have been done.

One of the association’s major accomplishments with the valuable contribution of Dr. Grigoris Kaltsas and Polyzois Makras, is the foundation of a clinic for adults suffering from histiocytic disorders. It is located at the Laiko hospital and all adults with histiocytosis are admitted. The hospital maintains a database with all patients details which is extremely helpful. Most importantly, in my opinion as a mother, its medical staff genuinely cares about our problems and tries to actively help.

Another major accomplishment of Artemis Association is the attribution of a disability percentage of 67% to patients with histiocytic disorders as per the decision at the plenary session of the Central Health Committee during its 192nd meeting held on 24/6/2003. Based on that, my son, who was admitted by the University of Samos in 2007, was transferred to the University of Piraeus. The law regarding transfers of students suffering from serious diseases after participating in examinations states that are entitled to a transfer regardless of the number of open positions. According to the provisions of article 35 of law No. 3794/2009, the list of serious diseases includes malignant tumors (leukemia, lymphomas, tumors). I submitted all the necessary paperwork, along with Dr. Kaltsa’s medical report and managed to arrange my son’s transfer. This success story now serves as a point of reference and, in the future, more parents can use it to have their children admitted by a university near their home, family and medical team.

I am writing this note to make others aware of this possibility. Most importantly, I am writing to share a message of hope. Back when my son was sick, the last thing on my mind was him going to college. The same might be true for you. However, know that what now seems impossible, in a few years will be a reality. There is always calmness after the storm. I have learned to live with this illness all these years. So has my family. We monitor it and hope that one day it will simply go away. We further hope that soon all research on finding a cure will pay off. We must all have faith in a better tomorrow.

Finally, I would like to thank Apostolos and our doctors for everything they have done for us, and for all they will do in the future.

Be well,

Voula.

For our father,

What could you possibly write about your father, especially when his passing is still fresh? It is hard and difficult. Our memories are still fresh and going back in time only makes matters worse. A rare disease, an infection, and a series of hospitalizations were enough to darken our fondest memories. He was a person filled with joy and energy. He knew how to have fun, how to smile. He had to live with terrible pains and a bag full of pills for over 16 years. But he never gave up! His love for his family and for life kept that smile on his face! He was determined to shock the doctors with his progress! And he succeeded at that. He only failed the last time around. The hardest part wasn’t that we all had to learn to live with the illness. The hardest part was not knowing what came next. It is infuriating and distressing to hear doctors say “we just hope for the best” and understand they don’t really know what to do aside from watch our father grow weaker and fainter little by little.

Like we said, he never gave up. He left wearing a smile on his face. He only left after having completed his duties as a father. He watched us grow, study, lead our own lives. He taught us to be strong and never give up!

Dad, unfortunately your journey on this earth was short and difficult. Unfortunately we didn’t get to enjoy you as much as we would have liked. We thank you though for being our father. We thank you for creating a lovely, healthy family with mom! We thank you for lasting this long for the sake of your children! You never let go. You kept fighting the difficult fight and getting stronger each day.

We thank you for everything. We love you and will love you forever for all that you are!

Your daughters,

Penelope and Filina

It is hard talking about diseases, illnesses and other medical conditions when there are so many other problems around. When histiocytosis struck our family, both my husband and myself fought a tough battle. But it was Natalia, our daughter, who fought the greatest one.

We knew nothing about histiocytosis nor did we know where to turn for help. Hospitals were strange places for us and we couldn’t easily understand all the information doctors provided. We started searching on the web for something that could answer our questions and perhaps offer different solutions. It is during such times when you realize how trivial the problems you have encountered so far are.

But we were lucky. We discovered the Artemis Association and met not only president Mr. Kontoyanni but also Ms. Baxevaidou, a member of the association for the past 20 years. Thanks to their knowledge, experience and continued support, we managed to overcome the first shock of the diagnosis. Together we could hope that we would win this battle.

We feel blessed for having people among us who actively support research and patient education, but most importantly, for the way they embrace families stricken by this illness.

In 2011, I decided to run the 10 km race of the 29th Athens Classic Marathon which took place on November 13. I was proud to wear our Association’s t-shirt and answer questions about this rare condition.

The challenge will never be over, but now we know we are not alone and that the Artemis Association will always protect our Natalie like a guardian angel.

Iro

I am a friend of a family whose son developed histiocytosis at the age of eight. This event led to a series of reactions both within the family and their social circle. It was an unknown, rare illness and no one knew the dangers it entailed and what would happen in the future.

Years went by and uncertainty clung to the family as their roamed hospital corridors. But then there was a ray of hope to replace their despair.

The news of an association dealing with this disease arrived at the right moment for the family. Feelings of fear and uncertainty were replaced by hope driven by knowledge.

Family and friends, we dedicated ourselves to help the Artemis Association build up a strong presence and provide its full support to families new to the disease. But what made the family smile again, was that the Artemis Association held and still holds an annual medical conference named “The Nikolas Symposium”. This symposium is attended by renowned doctors who share their knowledge and offer great help to patients and their families.

The feelings I have felt all these years standing by this family are hard to express. Even today as we live normal lives and nothing reminds us of the past, I still greatly admire their strength and faith.

I wish with all my heart that the pain and agony some families feel today, will soon become a faded memory.

Research on the pathogenesis of histiocytosis continues thanks to the strong presence of the Association. I hope that we’ll soon have the answer we have been looking for all these years.

Sincerely,

S.
A family friend

I never believed that I would someday become pregnant.

Despite all the difficulties I had encountered during the past years with my health condition, conceiving was easy and I was thrilled with the idea of being a mother.

This magic journey began with plenty of questions and with quite a lot of worrying. Would I be able to pull through until the end? How would my health be affected? What about my medication treatment? Would it harm the baby? Would I be able to give natural birth? Would the long years of daily medication for histiocytosis prevent me from breastfeeding my baby?

Pregnancy is different for each woman. In my case, everything was generally ok, apart from the physical and emotional changes I experienced due to hormones. I also needed an increased medication dosage to prevent placental abruption, resulting in fluid retention.

Moreover, towards the end of the pregnancy and after some tests, elevated levels of thyroid hormones were observed, and I had to follow a short term medication regimen.

Nevertheless, I had a full-term pregnancy and I gave birth to a healthy baby girl with natural labour. Everything had turn out well, I gave birth fairly quickly, with no induction or epidural. I was filled by an inner and outer strength. I said I could do it and I finally did!

I only wish that I was not alone on this journey, that I could have companions to share my anxiety and concerns in view of this new and wonderful part of my life…

Stavroula

My pregnancy started off smoothly and I tried not to think too much about how histiocytosis could affect it. But as the weeks went by, I could not help worrying about the possible impacts not only on myself, but mainly on the baby. Could it be affected by the antidiuretic hormone I had to take? Would I be able to give birth without any problems? What were the chances of my illness getting worse due to pregnancy? Would the baby be alright? All these thoughts troubled me as I am sure they trouble all pregnant women living with this condition.

The only information I had, came from the extremely limited medical literature available on the Internet and from various questions I made to Dr. Kaltsas and Dr. Makras who guided and supported me during the course of my pregnancy and advised that I increased my medication dosage.

But when information regarding varying cases is limited and as pregnancy progresses, anxiety piles up. Thankfully, the disease recessed due to the pregnancy because the immune system of the body becomes less active in order to protect the fetus and so the symptoms recessed.

As my due date drew closer, I decided to have a C-section. Why risk potential complications and cause the baby unnecessary suffering and discomfort? Wasn’t it dangerous enough because of my illness? My doctors agreed to a C section. At the hospital, the anesthesiologists and endocrinologists initially refused to proceed with the caesarean because they knew little about histiocytosis. After a long doctors meeting, they finally decided to give me full anesthesia with the help of an experienced anesthesiologist.

When the procedure was over, I was moved precautionarily to intensive care and I wasn’t allowed to see my baby. An entire day filled by waiting and despair went by before I could see and hold my child for the first time. I nursed it with no problems for the next few months. I decreased my medication dosage for histiocytosis and unfortunately the symptoms returned.

But because I wanted to have another child, I decided not to burden my body with another chemical treatment that could harm the baby. This time my pregnancy was easier compared to the first in terms of anxiety related to my illness. I knew what to do and what to be careful about, so time passed in a more relaxed and stress-free way. I had my second child, again with a c-section, but this time I had an epidural, as the anesthesiologist that helped deliver my first child reassured me that there would not be any problem whatsoever. Everything turned out well and this time I got to hold my baby right away.

Ten months have gone by, and I am having local therapies to suppress the symptoms of the disease until the baby has grown a bit so that can return to my usual treatment.

In closing, I would like to say that pregnancy for a woman with histiocytosis, is not much different from a common pregnancy. Fear, fatigue, anticipation and anxiety are the same for all women and so is the bliss of holding your newborn baby in your arms.

Christina