On Saturday, November 1, the second Spanish conference for patients with aHUS was held in Granada, Spain.
There are an estimated 150 people living with aHUS in Spain. The conference was developed to raise awareness of their plight.
President of the Association of Patients with aHUS in Spain (ASHUA), Mr Francisco Monfort, whose youngest son is living with aHUS, established the association, along with his wife “in order to be in contact with patients and their families and share all the information they may need.”
Describing aHUS, Mr Monfort said, “aHUS is an ultra-rare disease that affects very few people and one that is not very well known.”
The association provides support and reassurance to patients in the most difficult circumstances. According to Mr Monfort, when receiving an aHUS diagnosis, patients and their families are completely disorientated, as many have never heard of this disease.
Seminar attendee, Mr Fernando Molina, explained how he felt when being diagnosed with aHUS.
“You feel great anxiety. You don’t expect to have such a serious and rare disease, and having so few patients and being so unknown, you feel lost and you don’t know who to turn to.”
Mr Molina has only recently discovered and connected with ASHUA.
“ASHUA was a great find. It allows me to meet with other people who are going through the same thing.
“You move from feeling so alone and isolated, to being part of a community that is informed of any developments or progress of the disease,” Mr Molina said.
According to Mr Monfort, the meeting was helpful for attendees for “even though they had been suffering from aHUS for years, there are still many things they are unaware of.
“We have been told that thanks to this seminar, they’ve gotten answers to many outstanding questions,” he said.
Mr Molina explained how his life has changed since being diagnosed with aHUS.
“The disease has completely changed my life. I was diagnosed with aHUS five years ago, and for me, the first thing that stood out about this disease was the impact it had on my quality of life.
“It was a radical change, both personally and professionally,” said Mr Molina.
“Before my diagnosis, I would work up to 11 hours per day in construction. But after becoming sick, I had to quit.
“No longer can I do simple things like go shopping, because I immediately feel exhausted,” Mr Molina said.
“For me, the change was so sudden. One day I was working, and the next I was in the hospital connected to a dialysis machine, where I spent the next 45 days.”
At 44, Mr Molina is now retired and continues his dialysis regimen. Due to the risk of his aHUS flaring, he is unable to be put on the waiting list for a kidney transplant for, according to ASHUA, the risk of organ rejection is 95 per cent in patients living with aHUS.
Mr Molina, like many Spanish aHUS patients, continues await access to the only clinically proven, life-saving treatment for aHUS, Soliris (eculizumab) which, although not a cure, prevents most of the complications associated with the disease and protects a new transplanted organ against aHUS.
Mr Molina has been waiting to access Soliris for two years now.
“The problem is that it is a very expensive medication and one that I must take for the rest of my life,” he said.
Last year, Mr Molina underwent surgery on five occasions following complications stemming from aHUS.
“You might have a few good months, but a complication may arise anytime, or there may be another slump that stops the lucky streak,” said Mr Molina.
We send our love, best wishes and support to our friends in Spain and sincere hope that they secure subsidised access to Soliris soon.