Why I use 300 grams of weed a month…

300 grams a month?! I must be the luckiest person alive. Or maybe I’m just the biggest pot head? Here is my story.

My name is Thorsten Hetfeld and I have McCune-Albright syndrome, formely known as Polyostotic fibrous dysplasia.

What is McCune-Albright syndrome? McCune–Albright syndrome is a complex genetic disorder affecting the bone, skin, and endocrine systems. People with the disease develop areas of abnormal scar-like tissue in their bones due to the bone dissolving. This is very painful and can lead to abnormal growth and uneven development resulting in deformities.

It is most common amongst children, especially girls, but usually ends after puberty. Boys are very rarely affected and grown men even less. Unfortunately for me, I was affected at a very young age and puberty didn’t change a thing.

My parents started documenting my bent and twisted bones at the age of 5. 
Since I can remember, I’ve always been in excruciating pain, especially from my right hip down to the ankle. Not many people are affected by this illness to the extent and severity that I am. As a result I was never able to participate in physical activities at school or in private.

Given the severity and rarity of my condition, finding doctors who where interested in seeing me was never hard. Most of them voiced the interest to simply amputate my legs.

I am very grateful to my parents that no matter what doctors told them, they always looked for another, more educated opinion and alternate solutions. Amputating my legs just wasn’t an option for them. Unfortunately as a result I spent the majority of my adolescent life travelling around Germany from doctor to doctor and hospital to hospital. At the age of 18, there was no alternative solution anymore and bone grafting was unavoidable.

Half of my front right pelvis (iliac crest) was transplanted to my right thigh. All went reasonably well until two years later at the age of 20, the bone had dissolved so much that the next operation was due. My left iliac crest was transplanted to my right thigh. This in turn helped me a lot until further complications resulted in another transplant three years later. My rear right half of the pelvis was transplanted into my thigh.

This whole procedure would have continued through the ages 25, 26 to 33, 34… and on, until eventually I would have had no more parts to spare for transplants. During this time I began questioning my existence and how I was supposed to live a normal life if I would have to go to a hospital every 2–3 years and donate bones to myself.

I had no option but to endure the hardship and pain bestowed upon me and take extreme painkillers (costing my health insurance an excess of 200,000€ per year) to deal with the excruciating pain. My future would have to be built around crotches and painkillers. A reality which is very hard to deal with, especially for a 23 year old who is in the primetime of his life.

In 2005, the pain once again was so excruciating that I was no longer able to circumvent another transplant. My left fibula was transplanted with additional new bone material from the basin into the right thigh. The entire thing was fixed transversely with a huge metal plate and 10 screws through the bone.

(left) 10 screws in my right thigh, (right) removed fibula

In 2013 the transplanted fibula was almost none existent anymore due to the fact that it had almost completely dissolved. Consequently the pain was once more unbearable. After following up with numerous doctors, I was presented the following options:

  1. open up the arms and take out the Ulna or the radius bone and transplant it into the thigh.
  2. take out the lower part of the ribcage and transplant the bones into the thigh.

After been given these options I was dumbstruck, to say the least. How would I be able to move at all? I was already not able to walk and cutting open my arms and torso would render me completely motionless. In addition to this, the operating costs would easily lie in the 5 digit range again.

So in 2014 over New Year, I decided to check myself into a pain clinic in Munich, where the supervising doctors started experimenting on me with several different drug concoctions. After seeing little to no progress, the doctors gave the green light (pardon the pun) to start testing with medicinal Cannabis. This was in early August last year (2015). The success so far of this treatment has been phenomenal and has changed my life in terms of dealing with the pain. I typically smoke 100 grams and consume the other 200 grams via rick simpson oil capsules. It helps me get my mind of it and can even ease me out of pain completely if I don’t overdo it with walking (yes, I can walk again).

Me standing on the left, raising awareness for legalisation

I am amazed at how much my quality of life has increased since starting the Cannabis treatment. As of late September I am able to walk short distances again. However, since German health insurance companies don’t cover the costs of medicinal Cannabis, I am now unfortunately completely bankrupt, after spending north of 4,000€ a month on Marijuana. I can now no longer afford to continue my treatment. Health insurance companies have no problem paying for Opium based painkillers but Marijuana, given it’s shady legal status is not covered (even though it is sold in government regulated pharmacies). Consequently I am forced to once again resort back to using my wheelchair, crutches and enduring the extreme pain.

My greatest gratitude goes to my wife, who has guided and helped me through the struggle of the past 20 years. She was at my side during every operation and every difficult moment. Her support was greater than anyone can ask for.

I now work together with the German Cannabis Association to help raise awareness for the legalisation of Cannabis. We are working together with TokeToMe to magnify our outreach and impact.

Thank you for reading my story. I hope that I was able to educate and inform about the medicinal benefits of Cannabis, so that the battle for legalisation may finally be won, one step at a time. If you are interested in reading more about my story, feel free to check out the articles about me from the german media.

Süddeutsche Zeitung (left), Bild Zeitung (right)

If you are interested in finding out more about McCune-Albright syndrome, please feel free to click here.

For more stories and news on the legalisation of Cannabis, subscribe to the TokeToMe newsletter.

Also, feel free to download the TokeToMe app from the iOS and Android stores, if you like finding and talking to likeminded Cannabis smokers from around the world.

P.S. Thank you for reading this far! If you found value in my story, I’d really appreciate it if you recommend this post (by clicking the ❤ button) so other people can see it.