Raising Awareness for Connective Tissue Research

Hi everyone,

My name is Celia. I believe I am one of many people experiencing extreme and irreversible side effects of a common hair loss medication known as minoxidil. I also believe that the impact on my health has been more severe due to a deficit in research on connective tissue disorders like Ehlers Danlos Syndrome, a condition most commonly found in women.

My hope is to direct money and attention to this issue and motivate further research on the topic in order to 1) ensure no-one else finds themselves the unknowing victim of these side-effects, and 2) to chart a medical path forward.

I began taking minoxidil for stress-related hair loss associated with a tethered spinal cord (for which I had surgery), and the exhaustion of navigating the healthcare system with what I now understand to be the poorly understood connective tissue disorder, Ehlers Danlos Syndrome.

Over the course of the next six months I developed a litany of devastating issues which initially I did not connect with the medication. First, my eyelids swelled up and eyesight drastically deteriorated. I developed extreme light sensitivity and refractive issues with light. My doctors can only speculate my optic nerve was damaged. The tissue on the front of my eyes loosed and the muscles around my eyelids atrophied somewhat. I have visible veins that were not visible before all over my eyelids and legs and spontaneous yellow bruising that comes and goes. Later tests revealed that I had chronic vein insufficiency. The muscles in my arms, legs, and glutes became very small as well. Not connecting these issues at first to the medication l unfortunately added a popular anti-androgen (Finastride and then Dutasteride) and then developed adipose tissue deposits on my arms and legs. Lipedema, which is on the spectrum of connective tissue disorders. My right breast became bigger and has continued to grow.

As people with lesser known medical issues understand - I researched every symptom, condition and requested every test and found that doctors were either stumped, not interested or simply did not believe my symptoms. Six months after taking the medications it was clear they had caused irreversible damage to my body on every level. I stopped taking them, but the changes have not improved at all.

By the time I got on a plane to Cleveland to access a lymphatic specialist for testing to assess the swelling in my ankles and feet my skin had begun thinning all over at an alarming rate. My best friend helped me order a connective tissue panel when we landed. It is so bad today, I cannot really shower normally in hot water or wear normal clothes without hurting my skin. My skin gets bizarrely looser from my body every day no matter what I do. It is hard to go in the sun without my skin burning in minutes even with layers of sunscreen and clothes on.

When I began looking into the side effects of minoxidil, I found a community of people who had taken the drug and shared many of my symptoms. In fact, a whole subreddit exists for r/MinoxidilSideAffects. These people have had devastating side effects including muscle wasting, skin thinning/laxity, hormonal issues, and vision changes. Bizarrely, they directly compare these changes to those seen in Ehlers Danlos patients.

This is the most commonly prescribed hair loss drug in the world. The side effects have not been recognized by doctors and are far less pronounced in many people than me. I have yet to find someone specifically with skin symptoms as severe but this may be due to two reasons (1) most users are only using a topical form of the drug, And (2) I believe that a pre-existing connective tissue disorder made me more susceptible to the side-effects of this medication.

Women are more prone to having inherited genetic connective tissue disorders in the first place, and hair loss drugs are primarily prescribed to, and studied in, men. That being said- there are many drastic cases of men who have used the medication topically for a very short time and suffered massive consequences.

This drug is so widely prescribed, that I didn’t even question its safety when my doctor suggested I take it. Now, my own investigation has connected me to a small network of people within the medical community who privately acknowledge the possibility that minoxidil can be responsible for devastating health issues.

I have spoken with a medical researcher who had similar side effects- he noted that his symptoms became worse after stopping the medications and did some testing. He found evidence that his body had become dependent on the medication on a cellular level and has continued to take it to keep things from worsening.

This researcher directed me to a well-known retired doctor who was involved in a clinical trial on minoxidil in the 1980's. It turns out he has had many many people reach out to him with all sorts of symptoms. He has taken my phone calls, spoken to doctors on my behalf, and offered to review my medical records.

Despite several CURRENT research studies exploring using minoxidil for conditions that cause an excess of collagen production, it's risk for effecting the bodies collagen supply is not widely accepted . There are many people who notice these effects after taking minoxidil, but are told they are imagining things or simply aging. For those of us whose quality of life has been dramatically effected, there is no clear path forward.

I have created this fundraiser because I do not know where else to turn. Please, reach out to me if you have ideas, interest and experience setting up a medical research fund in an effort to both advance current connective tissue research and help patients like me suffering iatrogenic harm.

Please also reach out to me if you have connections who may be interested in helping look into the changes in collagen seen in patients who have taken these drugs. Unfortunately since creating this page I have lost all muscle and my skin is rapidly disintegrating due to complete loss of cellular connection in some places. My situation is dire. I am looking for researchers who are working on exploring epigenetic changes after medications and who may be interested.

The public needs to know about the harm these drugs cause.