Stand with Sofia

With your help

"Every penny would help fund and get a stem cell therapy and naturopathic follow-up. These are not available in the Netherlands and I am would be so very thankful if you shared my vision and trust on regenerative medicine. I have hope that I don't have to depend on a lifetime injection or IV infusion to keep the boat a float. I would love to complete a triathlon within the next years, that’s how much trust I want to have on my body, I want to fully heal and rewrite the doctor’s diagnosis."

Sofia

My ask

Here I am now, sharing my story, reaching out to you all—and seeking support on the monetary side of things, as I continue on my path of healing and recovery.

---READ BELOW FOR STORY---

The surge of autoimmunity

Have you in recent years heard more and more about autoimmune diseases? The surge of them, or the better the knowledge we have about these, the more we find out that they are the cause of many disorders in the body. This happens to be the source of my affections.

This year marks the tenth year as a patient with an autoimmune disease. For the ones who are not familiar with this state of being, an autoimmune disease allows one to live and perform life almost normal, and I want to emphasize on the almost. Since for the past decade I have spent countless weeks of my life in-and-out of health. Some periods full of pain, inflammation, and grief contrasted by periods of well-being and being able to do almost anything I set my mind to. That almost yet again.

The diagnosis and the first five years

Ten years ago, when all this started, I was taken to private and public hospitals in Mexico, despite seeing a group of specialists, they never seemed conclusive about diet being part of the problem, let alone, the solution. My mother and partner at the time became full-time caretakers when I left the hospital, weighing 35 kilos at the edge of everything, with a thrombosis, and almost an adrenal failure. These being only the side effects of the initial health crisis. Months later, following the doctor's medication (16 pills a day at different times) plus a miraculous diet I found online, I regained kilos and vitality. Lessons were learned and some strength was rebuilt.

Some years later, I decided to live in the Netherlands, the country of my mother, hoping the first world health care would help me to become healthier. This decision was only emphasised by the fact that I was going through another health crisis, that came out of nowhere and affected another body part, this time the skin. Even though I was laying on a hospital bed with 24/7 care, they could not figure out where was the affection coming from. After a surgical cleaning surgery, and a dermatologist being involved, they concluded that steroids were the way to go and I was sent home in a wheelchair (to paint a picture of how much skin and muscle was taken out my wound). Months of slow recovery and my body on medically induced low immune system.

Five years later, another crisis

I am now writing this as I face yet another crisis, and the impeding decision of committing to the only option my specialist prescribes.

My specialists in the Netherlands have recently prescribed a medication known as a biological, a first line pharmaceutical treatment. My doctor told me over the phone as I was taking a walk in the scarce winter sun: “This treatment has been in use for the past twenty years. The application has two options, self-administered which you have to inject yourself every two weeks or IV which is administered at the hospital every eight weeks.” I expressed hesitance over this solution, that would hinder my mobility and compromise my calendar, how far I can travel, how close I have to live from the hospital. The doctor reassured me: “The pharmaceutical doesn’t pay me for this”. At this point you might think others have it much more complex than me. As woman in my early thirties, with a promising career, I feel devastated. Because I can almost be normal, an the promised career remains a promise. This treatment is to be taken for life. There is no opt-out, even if the disease is in remission, for years. I would still be unable to be off of it. I can’t imagine myself taking this life-long commitment. This solution is meant to handle only one disease. I have yet to face a series of surgeries that will mechanically set my eyes back in place as my vision has been affected since two years ago. I am not able to drive, or do work that requires precise vision, even riding my bike becomes a threatening activity. I rarely look at people in the eye for fear of showing how I look. Throughout the journey of an autoimmune patient, one is likely to develop another autoimmune disease, as the cells in my body behave unhinged and not knowing how to care for me. This year, I hit rock bottom, when that treatment was offered and the surgeries are not even on the calendar. “I am on the bench… of life” I told my mother.

The reality of traditional medicine

I am certain that the number of specialists that treated me in Mexico and in the Netherlands have been doing all they can do within their vast rules of protocols for this kind of illnesses, but seeing my life plans on hold due to long waits and not seeing progress nor change. I have been seen by: internal medicine doctors, gastroenterologists, and all the crew of ophthalmologists and optometrists at the Catharina Ziekenhuis knows my case. I asked for a second opinion at the Oogziekenhuis in Rotterdam and when I was finally offered the surgery I had been waiting for, I wasn’t fully on board with the doctor that I was assigned to. I followed my heart and said thank you, and signed up to yet another waitlist at the AMC in Amsterdam. This is to be due this year.

The journey doesn't end here... After all this time, I need to find solutions in my own hands. I have done what has been offered and recommended by doctors: diet changes, lifestyle changes, acupuncture, meditation, yoga, CBT therapy. Every now and then, there is some form of illness resurfacing, all kind of complaints persist:

-Catching a flu really easily

-Chronic iron deficiency

-Fatigue

-Brain fog

-Inflammation

-Sleeping inadequacy

Ten years have not past in vain, I have immersed myself on the topic and pursued a healthy lifestyle, trying my best to keep the illness dormant by eating healthy, taking supplements on advice a naturopath, to keep up the exercise, with the help a trainer that would understand my hormonal imbalance and iron deficiency.

Chronic fatigue and the medical system

I have gone full into research about these medical conditions, I have found hope in stem cell therapy. You might have hear about this before, this is quite a costly treatment and it is not offered within the Dutch healthcare system. My health insurance does not cover this since it is still considered too alternative for their alternative list of treatments.

With the help of my mother, I am raising the amount we need to cover this treatment that will last six months and with interesting testimonials, I have regained faith in regenerative medicine and that would be the baseline to reprogram my cells where that dormant illness still lives within my body.

But let's be realistic - if you go against the conventional medical system, official financial support is nowhere to be found. Unfortunately. Every therapy, pill, and treatment is straight out of our pocket. And it’s sums up... We are still 12,000 euros short, so we decided to do this crowdfunding effort to speed things up.

I thank you from the bottom of my heart—feel encouraged to reach out if there is something you want to share with me.