YouConnect turns yellow for Wishbone Day
Because awareness makes a difference!
Next week, from May 3 to May 7, will undoubtedly be a bright week. We invite everyone who’ll be in contact with us next week to send us a picture before May 8, in which you are wearing at least one yellow garment or accessory (the more yellow the better!). For each submitted photo, YouConnect will sponsor an amount to ZOI, an advocacy group for and by people with Osteogenesis Imperfecta (OI), or brittle bone disease.
You do not have to be recognizable in the photo, if you prefer. From all submitted photos, we will create a mosaic at the end of the campaign that we will share with our network.
Why do we want to support ZOI?
OI is a rare disease, only 0.008% of the world's population has it. Yet everyone at YouConnect knows about OI, because the son of one of our colleagues has the disease. We wanted to give her and her family a boost and, as a part of our vision on corporate social responsibility, we set up a campaign for ZOI. Our colleague already received a lot of support from this association and after our interview with Bruno from ZOI, we understand why. ZOI is an impressive association that runs entirely on volunteers and that moves heaven and earth to support as many fellow sufferers as possible.
Why next week?
Every year on May 6, people all over the world come together to celebrate Wishbone Day. On this day, people with OI make themselves heard and want to create more awareness about OI and the impact OI has on their lives.
What is OI and what does ZOI do?
No one can explain it better than Mr. Bruno Van Dijck. He is chairman of ZOI and has a mild type of OI himself.
Interview
YouConnect: Hello Bruno. First of all, thank you very much for your time. Let's start at the beginning: What exactly is OI?
Bruno: OI is a disorder of the connective tissue (collagen). Just as reinforcement bars support concrete structures, collagen supports the bones. If the collagen is of poor quality or insufficiently present, it results in bone fragility. The symptoms are very diverse: bone fractures, blue whites of the eyes (sclera), risk of hearing loss (in the milder form), to crookedness of arms, legs or the spine, overly mobile joints, dental abnormalities, low body height and deformities of the skull.
YouConnect: I understand that the disease is usually hereditary but with our colleague, there is no one else in the family who has OI, how is this possible?
Bruno: In most cases, a person gets OI by inheritance through an affected parent or parents who are carriers of the abnormal gene. I got the disorder from my mother and also passed it on to my daughter. But spontaneous mutations also occur: In about 25-30% of patients, both parents are healthy and the mutation is spontaneous.
YouConnect: OI apparently has different types and degrees so not every patient looks the same and has the same symptoms?
Bruno: That's right. There are different types and each type has its own characteristics. There are people who have type I, the mildest form, so you can't tell from those individuals that they have OI. Others do have certain physical characteristics, such as a wheelchair, crutches, etc.). This often leads to misunderstandings, even by doctors, who don’t always know the disease that well.
YouConnect: Our colleague also said that she didn't feel immediately understood by some doctors when the diagnosis of her son was not yet clear.
Bruno: Unfortunately, this is a recurring story. Even once the diagnosis has been made, it is very important as an OI patient to find a good specialist and to make it clear when you are admitted to hospital that you need special treatment. This is also why we have drawn up a script with ZOI that we would like to present in different hospitals. There is also a project from the Belgian government, a kind of working group for rare bone diseases. There we are working on guidelines for both the patient and the medical community. This is really a fantastic project and we are very happy to have a voice in it.
YouConnect: That brings us to ZOI. I understand that raising awareness about OI is one of your main goals. Your website also states, "Because awareness makes a difference!" What else do you do as an association?
Bruno: First of all, we want to be a meeting place for OI patients and their families. It's so good to meet fellow sufferers and share experiences. We have a lot of knowledge that we like to share. We can give tips on subsidies or make contacts for people who travel abroad and want to be sure of good medical support. We also work closely with other international associations and thus have a very large network.
YouConnect: With our campaign, we not only want to put you in the spotlight, but we’ll also be supporting you financially. What do you do with donations you receive?
Bruno: Very much. ZOI runs entirely on volunteers. What we don't do is financially support someone individually. However, what we do is stimulate scientific research and co-invest in all kinds of projects for the entire OI community. For example, there is currently a large "impact survey" on OI that is supported by the European OI world. We also organize info moments with guest speakers who talk about all kinds of OI related topics.
Thank you very much, Bruno, for sharing your story. For people who want to know more about OI or ZOI, please take a look at their website.
All ProudConnectors are looking forward to next week and we hope our inbox turns bright yellow!