Stories

Mari Carmen is the older sister of patient Juan Manuel, she takes care of her brother along with his wife. He was diagnosed with ALS in February 2020 and since then he has followed a clinical trial that includes Ketas (Ibudilast) which is not yet approved in Spain, where Juan Manuel lives.

Mislav was diagnosed with Grade II astrocytoma, a type of brain tumour, in 2018 and has struggled with the Croatian healthcare system to obtain a treatment, Fycompa, which was not approved in Croatia. TheSocialMedwork was able to help him access the medicine and he is now one of the patients that we are happy to not have anymore: the hospital where he is being treated has approved the import and treatment of Fycompa to him for free.

Marcus was diagnosed with amyotrophic lateral sclerosis (ALS) in 2016. For the past four years he has been committed to raising awareness about the underfunded disease and the path to finding a cure.

I’m lucky. It's been 4 years since the first MND symptoms, only my voice has been impacted.

Two and a half years after his diagnosis, David found a medicine with off-label application for MND.

After 40 years with primary biliary cholangitis, Fiona's mother is still alive thanks to her daughter's dedication and a liver transplant.

After 3 years of living with ALS, Marc found a new medicine on the other side of the world. 

With tears, laughter and hope, Mark and his family find their own way to cope with ALS.

Diagnosed with ALS only 6 months ago, Peter went against the current to find more options to treat his disease.

Still walking and talking after 4 years with ALS: we share Bakr's experience of living with a rare disease in the UAE to further his goal of creating awareness and to connect with other ALS patients.

In recognition of Rare Disease Day, our colleague, Sera, shares her story of her dad's fight with Multiple System Atrophy (MSA). 

Teresa's husband was diagnosed with ALS. She spent 11 years as his caregiver and discusses her experiences.

Alexandra was lucky enough to be on a clinical trial of the new migraine treatment erenumab (Aimovig) but couldn't access the medicine afterwards until she found TheSocialMedwork.

This is a personal account of Zoran, a client of TheSocialMedwork's who made it his life to help raise awareness of amyotrophic lateral sclerosis (ALS) in Bosnia after his own diagnosis.

"I heard by chance about a new clinical trial for migraine (for the substance that would become Aimovig) on the radio and the doctor encouraged patients to write to him to see if they were eligible candidates. So I did write and they accepted me for the trial. This trial was going to be 18 months long."

Michel has chronic migraine and shares his experiences seeking a treatment that works and his advice for other migraineurs. Image: stock - Michel wishes to remain anonymous.  

Abdur was diagnosed with ALS in 2016. His uncle, Jamashaid, shares his story and how Radicut (edaravone) has helped Abdur to live better with ALS.

My father, who was a general practitioner before he retired, was with me when we heard the official report of the neurologist. Afterwards, sitting in the car, he had to digest the fact that both his son and daughter had multiple sclerosis.

I was looking for my friend, he has motor neuron disease (also known as amyotrophic lateral sclerosis - ALS) from working for Chernobyl nuclear station crash removal.

When the US Food and Drug Administration announced in May 2017 that a new drug had been approved for the treatment of ALS, my father and I were thrilled.

Bernard is a successful entrepreneur. He's tall, well dressed, with salt and pepper hair and a wry grin. He loves his family and is a golf fanatic.

 Abigail was diagnosed with head and neck cancer. She tried various forms of chemotherapy straight away, but they kept failing.

Hein Jamboers was diagnosed with melanoma in 2009.

In July 2013, Garmt van Soest returned home from a week of kitesurfing, ready to get stuck into some new projects at work and prepare a wedding speech for one of his best friends, Paul.

In March 2014, at the age of 39, Mirjam was diagnosed with B-cell non-Hodgkin lymphoma (an aggressive fast-growing cancer).

My mother was diagnosed with lung cancer and had been treated with a standard chemotherapy combination therapy and Xalkori (crizotinib), the other first in class before Alecensa...

In March 2014, Danny had just become a father for the second time when he was diagnosed with a rare form of cancer in his liver.

This is Anatoly's own story of 'helping a hero'

There were no more treatments left for Danny van Brenk in the Netherlands. His cancer had metastasized and untreatable. They could treat him in New York however. But the treatments are expensive.