To be able to fight, something that happens all the time

Yes, it has really been a while since I wrote here. Yes, a lot has happened since the last time, last fall 2025 we were down in Gothenburg to meet other families with Marfan syndrome for a whole week, Freja was so excited, imagine that she would meet people like her or as she herself said, I will meet people who are like me.

We had to fly down, me, my husband and older sister and Freja. Freja always thinks it is just as exciting but less exciting for the rest of us because we are afraid of flying hahaha. But just to bite the bullet and smile and imagine that it is cozy.

A week at Ågrenska, the days would consist of school for Freja where specially trained educators would be able to analyze her needs so that we could then take us to her school and make a good plan for her. During the days, we parents sat with other parents at lectures. IN the afternoon there was hope and play and we had time to socialize and get to know others in the same situation.

To finally meet others who understand your thoughts, feelings and fears was fantastic, finally you didn't feel so alone, more than us are going through the same thing.

Freja was the only child who needs a wheelchair to save on joints, the only child with so much pain throughout her body. We were 10 families, you can see how differently the diagnosis manifests itself for each person but one thing they all had in common and that was eating blood pressure lowering drugs.

Freja is wild as a cat, can never sit still and moves around with the other children and pulled up some shelves that were too high and I was terrified that someone would hurt themselves, we are so used to our child and her good body control and that she climbs and gets everywhere but we don't know how much others are able to do. There were many activities on the island we were on, an absolutely fantastic environment and fantastic food we were served. The week went by quickly and it was so valuable that you can hardly describe. We also got to see how different the help you get for Marfan syndrome can be depending on where in the country you live. I almost fainted when I heard how some parents had to fight to get help with their children. The week taught us so much, so educational and such a sense of belonging with others. In the summer of 2026 we will go to camp and meet the other families again, it will be so much fun and Freja is looking forward to it.

Here are some pictures from Ågrenska in Gothenburg.

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I myself am a lion when it comes to my children, I don't give up, I am 10 steps ahead constantly and demand the rights Freja is entitled to legally. I have been so angry for so many years, I have spent hours on the phone, hours online studying, spent hours writing to the health care system, beat the big drum when I had had enough and didn't think Freja was getting the help and respect she deserved and then I went to the newspaper.

Today Freja has the help she needs, a committed doctor at last, and a team that is part of her diagnosis.

Both of her teachers at school are committed and do what they can, she has adapted her schooling with 15 minutes of study, then a break for 5 minutes and so on. Breaks are the big problem, that's where she gets injured, she has told the school management that Freja needs someone with her, an assistant who is her guide to get through the days at school....this has still happened and I am really upset about that because Freja is currently at home because she is injured. Suspicion of a fracture in the upper femoral neck. Freja can tolerate a lot because she is always suffering from pain in her body but this pain was something new. I had to pick her up from school, she couldn't even be in the swimming pool because it hurt so much. The pain was actually similar to the stress fracture she had in her shin three years ago but the pain was more intense because it was where it was. It was so bad that they sent an ambulance. It hurt so much that we could barely move sideways from one bed to another. The ambulance guys took us to the nearest doctor in the village to make an assessment and then it was assessed that the ambulance had to go on and a medical transport was ordered so she could lie in bed to the hospital. She slept the whole way. Once inside the hospital she was able to move her leg, she said the pain had gone away a lot but not completely. A quick X-ray showed nothing but it was so late at night so we went home so we could then contact the children's ward and follow up on her injury.

Yes, by and large she is still home for almost three weeks, still in pain, but is being kept at rest (as best we can at home). Freja has been put to sleep and had an MRI. Spoke to her doctor today and the results show a fluid accumulation that they could see, difficult to assess, you can miss small cracks that are hidden behind fluid.. there is speculation about a strain injury so step two is to remove the load and give her crutches (which I think Freja doesn't care about using because she runs on her leg even though it hurts a little, it will hurt A LOT if she gives up) but to relieve the load to see if it is a load and if the pain stops, most likely there will be a new MRI if I may guess.

Yes, it is to continue to keep her calm and not give her opportunities for activities, it is a shame it is not summer because then she could have stayed in the water all day which she loves and this year there will be a new pool that Freja got for her illness yeeeeeej, thank you Mayblomman, understand what magic you create for her.

If you jump from Freja and focus on this tired mother who is currently struggling like a pig with a body that doesn't want to cooperate with me anymore. I have finally gotten answers to my whole life with all the pain and everything strange that I have suffered. The doctor in the village said that I have EDS, yes it is a connective tissue disease, little twin to Freja's but not as serious as hers. But all the questions I have carried my whole life have now been put on the table. Why have I suffered from my eye disease? Dry AMD, Macula, yes it belongs to EDS, my "popping" knees so I couldn't move my legs as a young man, wrists that hurt, runny eyes, tendon pulls throughout my body, severe childhood migraines, my pains around PMS, a bloated stomach as soon as you eat, weight problems in old age, the body's heat regulation that doesn't work, light sensitivity, jaw pain, dental problems, etc...

The last 1.5 years have been absolutely hellish for me, I feel like I'm going through hell with pain, every little bend hurts, my body has become incredibly stiff. I don't know how to use my feet, bend my toes here and there, how to sit, my knees hurt, my wrists are too damn bad, I can barely hold a glass, just writing here hurts like hell. I've cried a lot because I CAN'T GET ILL, I have to take care of Freja, I have to have strength and I absolutely HATE being limited. I can't stand the pain, it's too damn bad and it also makes me so tired, I'm tired of being tired. But with this diagnosis you're left without help, you don't get a team that knows connective tissue diseases, you just have to be happy if you survive the pain, I feel. I sat for several hours yesterday and dialed 1177 for the health service for help. I was refused to come to the rheumatologist, my plea for help with my body so that I can continue my job as a mother and caregiver to my child who has so much to do with his Marfan. I have written a self-referral to the pain department, wondering if they are willing to accept me? What happens if I fall? It is sick that especially regarding connective tissue diseases and other rare conditions that you have to fight like a lion over food to get any help - So many years I have fought for Freja to get the help she is entitled to... will I be able to fight for myself, I don't actually know but how will I hold on?

My job... how am I going to fix this, crying because I am so angry because I refuse to have it this way, I love my job at Systembolaget and now my body is working against me. Just moving a little while sitting here on the chair makes my body creak and every little part of me aches and takes focus away from me. I have to pause several times to be able to type on the keys because my hands and wrists hurt like hell.

Damn damn damn I say if I have to swear, I wonder what the meaning of my life is, how many challenges do I have to face? I feel like I have too many challenges to bear. Just being at home with Freja means I lose the measly half-time salary I have, but what wouldn't you do for your child when all you want is for her to be well, not suffer from injuries that will cause her trouble in the future.

There are many things you can change to make the pain better, of course, both for Freja and me, meditation, good nutrition (but as things stand now, you have to buy what you can afford), supplements are super important, for example, I can't do without magnesium because of my cramps all over my body...yes, one step at a time, today I live, taking small moments at a time...vacuuming or cleaning is a challenge and I have to divide the work because the pain becomes so intense that I can't even ignore it like I used to be able to do in my entire life.

Yes, if I woke up one morning without feeling anything in my body, I would absolutely think I was dead!

Have a nice day everyone, I'll try to enjoy the sun and maybe sit down with my pussy and meditate a bit.

Love and respect

Petra