Maria João Rezende: “I thought about going to Brazil to do a cultivation and extraction workshop”

Maria João Rezende, 57, graduated in Nursing and Midwifery, was only two years old when her sister, Paula, was born. Diagnosed with refractory epilepsy since childhood, Paula grew up between seizures and convulsions, which would eventually cause her other health problems and some mental retardation. It was almost at age 50 that cannabidiol (CBD) would substantially improve her quality of life.

Throughout her life, Paula always took several anti-convulsants, a huge “cocktail” of drugs, which Maria João thought was exaggerated, as they did not even produce the expected results. That's why she decided to look for other solutions, and in 2016, on a trip to Rio de Janeiro, she became aware of the debate about administering CBD to people with medication-refractory epilepsy. Everything changed after that trip. She went after CBD, looking for a better quality of life for her sister, then 50 years old. We spoke with Maria João to get to know her life story a little better, as a caregiver for a sister with epilepsy.

This interview first appeared on Documentary Patients (excerpts) and was published in issue #5 of Cannadouro Magazine.

When was the first time you heard about cannabidiol?
It was in 2016, when I went to Brazil, on a leisure trip. At that time, the use of CBD was being debated in the Senate and that's when I began to realize that there was a use of cannabis for therapeutic purposes. I decided to come forward and speak up, because I think that other people also have the right to know that CBD exists to improve epilepsy and that its availability in Portugal is a pressing issue. For a few years I had to make trips to get medicine for my sister. I always felt that I was prevaricating and that left me feeling uneasy.

Were you afraid of being “caught”?
I was always afraid, because, as they say in Brazil, “I have a clean record”, right? And therefore, being able to be, at the age of 57, caught in an airport with a bottle of CBD, would be something heavy. The day of the trip was always a bit tough, because we knew we were carrying bottles of CBD. I had authorization from Anvisa, as I could import 15 bottles of CBD from the United States, but why did I have to travel? Because I tried by mail and some bottles like that arrived, but they were also held up at customs.

Maria João has been an activist in defending the rights of patients who use cannabis. Here, in an intervention at the Ordem dos Médicos. Photo: Miguel Schmitt | cannareporter

And when that happened, what did you do?
I went to customs and showed the document as I went there to pick up an order. The person who helped me went to get it, but came back without the order and said he couldn't deliver it. She asked me if it was a medicine that was inside the package and I told her no. At the time, I didn't really know what to say, so as not to deceive anyone, but I told him that it wasn't, and that a doctor had given me the prescription. I showed her the documentation, said that my sister had epilepsy, that I couldn't get CBD here, I explained to her what CBD was and she asked me if she could take photocopies to show the boss, but he didn't authorize it. Each bottle had cost 250 euros, not so much for the money, but because my sister really needed it, because CBD cannot be stopped suddenly. And I said what was in my soul and appealed to the heart of the person who was assisting me. I told him for the love of God not to do something like that to me, that my sister had epilepsy, that if he didn't give me the order I wouldn't have enough oil to do the weaning. 'I'm sure if I had a daughter or a sister I would do the same, so I sincerely ask you to solve the problem for me. Talk to your boss, if necessary I'll pay the fine'. The person told me to wait and after about 20 minutes he signaled me and handed me the bottle, but asked me never to order it by mail again, because I ran the risk of having it back. From there I started going to Brazil and the USA. Fortunately, now I can order it from Europe. I don't feel like I'm doing smuggling or anything illegal, I do this for my sister and her health.

Are you embarrassed by what you do?
This is a challenge. I stand up for myself, but I don't want to harm other people, namely those who may have helped me at that time. And it was because he didn't want to put them in that situation that he had to travel. I was going to Brazil, either me or my husband, because sometimes we couldn't go together to reduce costs. The laboratory that made the CBD that Paula took did not ship to Portugal, so we also went to New York. We agreed and they mailed the bottles to the hotel. This time we brought six bottles. I brought three and my husband another three.

How did you feel at the airport?
I knew I wasn't doing anything wrong, but at the beginning it was always complicated. What I was doing was just a fight for my sister to have a better quality of life, which thank God she managed to have. Thanks to CBD, I have managed to significantly reduce epileptic seizures and that's why I took the risk. I always felt some tension, some stress, because I am a citizen who normally follows the rules, who has ethics. Despite having authorization from Anvisa and a medical prescription, I know that this documentation is not valid in Europe. But if they ask me anything, I can always show that I'm not smuggling, I'm fighting for my sister's health and well-being.

Have you ever been picked up at the airport?
Not. Fortunately I never had any problems. The bottles were also small, I don't know if, given their size, they drew little attention.

Paula and Maria João's mother was initially skeptical about CBD, but eventually changed her mind when she saw the benefits. Photo: Laura Ramos | cannareporter

How was Paula's reaction to CBD?
The reaction was excellent. And just because it was excellent, I take the risk. Paula had about 60 to 80 epileptic seizures per month, excluding epilepticus. From the moment we started giving CBD, Paula had a significant reduction in crises. In that month she passed to 18 and did not have epileptic disorders for several months. She even had only 8 to 9 attacks a month and at the moment she is having about 16. She has also lost a lot of weight, she was weighing more than 100 kg and with CBD she lost about 30 kg, which contributed to improving your self-esteem.

How was the family's reaction to the fact that Paula was taking a cannabis derivative?
My mother is 82 years old and at first she was afraid, but both the neurologist and I had already told her that there was not much else to do. Paula has two epileptic foci and they are not amenable to surgery. That's why I decided to turn to CBD. And at the right time I made that choice! I can tell you that I've never seen my sister so well. It was a rebirth of hope, realizing that there was something that doesn't treat her, but that gives her better living conditions, because living with this, every day, is terrible. For example, she was going to take a shower and we had to be next to her, because she could have a crisis and fall or get hurt, as happened several times. If we go for a walk on the street, we have to be careful to go next to her, because she doesn't sense the crises and falls flat on the ground. Being over 50 years old in a situation like this is very complicated. Neither does she have the freedom that a human being is entitled to have, nor do we, the family members, end up being calm anywhere.

In addition to reducing the number of crises, what other improvements have you seen in Paula?
We began to notice that it was much calmer. She was more agitated, sometimes even intolerant and aggressive. She would even raise her hand to hit my stepfather or my mother. With CBD she is much more controlled, more participatory, helps with household chores, has more pleasure in getting herself together, with her vain style. And these are palpable improvements, which we cannot deny. She ends up feeling much better. We have a chart where we record the daily crises and she sometimes comes to me, shows me the notebook and proudly says: “Mana, look: nothing, nothing” or “one”, and that brings her satisfaction too.

Did you become more autonomous?
No doubt. We are now taking care of her, but as we know that crises are rarer, we no longer have that need to always keep an eye on her and she begins to have more autonomy, right?

Maria João, in a long wait between numerous phone calls, to try to clarify how to get CBD in Portugal. Photo: Laura Ramos | cannareporter

In your opinion, what would be the ideal situation for Portugal?
Of course, it would be the availability of CBD in pharmacies and there would also be neurologists interested in monitoring these cases, namely who is making anticonvulsants and CBD, so that families do not feel alone. And so that we can, without fear, because we are not doing anything wrong, import or buy CBD, without feeling that we are prevaricating. So that we don't feel like "drugged", or that we are drugging our family. I appeal to the common sense of our rulers and hope that the CBD becomes available as soon as possible, for the sake of our families.

In practice, how would you like patients to have access to cannabis?
The ideal situation would be to be able to buy either in pharmacies or health food stores, as long as we have a prescription for medicinal purposes. But it's been almost four years since medicinal legalization and we still don't have CBD for patients on the Portuguese market, we have to buy it on the Internet. On the other hand, the lack of State participation in the sale of the only cannabis flowers that exist, with THC, for vaporization, also means that many other patients do not have access and are at the mercy of their fate. The Portuguese Observatory of Medicinal Cannabis, when faced with this question, says that there is still no answer. You can't cultivate either, so we all still have no solution in sight.

Maria João and Paula in their childhood

And don't you fear that, without the possibility for people to cultivate, the price will be too high in pharmacies?
It is obvious that yes and even I thought about going to Brazil to do a cultivation and extraction workshop. In Rio de Janeiro there is an association, APEPI, which monitors the cultivation, because there are families who are already authorized to plant and who have been trained to cultivate and extract. Because look, not all people have the ability to pay 250 euros for a 60 ml bottle, or 67 euros for a 10 ml bottle, which is what I paid now, with a discount, and that will be enough for little more of a week. Today I have the financial capacity to pay for this, but I don't know if I will have it tomorrow. So, yes, the ideal would be to be able to plant and those who wanted to do it for medicinal purposes, those who wanted to do it for recreational purposes. With rules, of course, with regulations.

Have you personally had any contact with cannabis?
I don't smoke tobacco and I've never smoked a joint! I have never had any contact with drugs, but I respect those who do and I get along with people who smoke cannabis, including doctors. Therefore, if we live in a free society, each one must do with himself what he wants. I don't see any kind of problem with cannabis and it would be a step forward if there really were the possibility for families to plant. And if they wanted to consume for so-called recreational purposes, they should also be able to, because we we can't be hypocrites, it's very easy to get cannabis! Is it fair to be labeled drug addicts or criminals? Or is it that whoever sells at exorbitant prices is committing a crime?