There is no "usual course" with this disease, as it is a so-called Orphan Disease. I can only speculate on this based on the worldwide contacts with affected people that I have. But even that is not accurate, because the medications available were all actually developed with one or two other diseases in mind, and the affected respond very differently. In other words: There are people in whom the disease breaks out, who do not respond to anything and are therefore immediately unable to work. So far, I respond very well to my first medication, but I am already experiencing tolerance effects, so I will soon have to "move on" to the next medications.
For various reasons, I do not want to go into this in more detail, but I mentioned it because otherwise many would say: Good education, just wait a few more years, then you will have equity, etc. :)
I am a classic worst-case planner and have come to the conclusion that buying real estate now makes sense. Why? Apart from the low construction interest rates, the expected increase in value in the purchasing region (or at least value stability), the great potential of the property (very cheap purchase price because there is still quite a bit to do—I have various good contacts who can help with this --> if the property is "well" developed, it will very likely be valued somewhere between 150,000 and 200,000) …
… it is so that my parents can still help me financially NOW and want to do so, meaning: they help me pay it off. I can STILL work NOW, and that will, if nothing goes wrong, continue for several more years. Ideally, possibly even for life, depending on my individual case and luck in terms of research (very little research is being done on the disease itself, but other research areas are adjacent --> synergy effects).
It is a tough topic, but … I am the sole heir. IF no serious illnesses intervene with my parents, I will inherit real estate in a region whose value is continuously rising at the moment — current estimated value, conservatively set: 550,000 euros. Then it is not an issue at all.
Should illnesses occur, need for care, etc. — there will very likely still be enough money to pay off my house anyway. My own disability insurance is high enough that I could afford all installment payments, pay off the house BEFORE retirement, and still be able to live — and that also if disability hits me over the next few years.
Worst case for me: inheritance gone due to care needs, I am disabled (creditworthiness), and no real estate (anymore), meaning: family ownership gone and I have not started or paid off any real estate financing. That is certainly worse than the second-worst case — taking over everything because various things have gone wrong. Then I will just have to sell during financing. In both cases, it is anyway …
In this context, I can really only emphasize how important it is to conclude a good disability insurance if you were born AFTER 1960. When I took out mine years ago, I never would have dreamed that I might possibly need it one day …