“Dealing with Pfeiffer Syndrome is tough, but it can be done.”
Pfeiffer Syndrome is no easy syndrome to go through. Not only do you have to worry about surgeries, but you have to worry about hearing and vision loss in the affected. This can be something that might trouble, put strain on, and even stress a family out. There are support groups and help that families of those affected with Pfeiffer Syndrome can go to and talk with. This provides the right amount of support for those that feel like they have a burden, or something that strains family life.
Pfeiffer Syndrome is something that never goes away. It will remain with the person for the rest of their lives. A lot of the people that have this Syndrome are just as normal as the rest of us, except the bones in their skull do not grow properly. They are just as smart, and as quick as anyone else. However, in more extreme cases the person might have delays, lose hearing or sight, and can have further health complications. This might make the Syndrome a bit more to deal with if you’re a parent or caregiver of a child with Pfeiffer Syndrome.
There are a lot of hospital and medical visits that are required with a child or adult that has Pfeiffer Syndrome. This means that you will spend a lot of time in and out of hospitals, and if you do not have exceptional health insurance that it might be a big financial burden on your plate as well. This can become a problem for those people that do not want to go through the burden. However, the outcome of the hospitalizations and doctor visits are always welcomed and used to create and better the person’s life and overall well-being. This might be a positive to look into.
Being an older child with this syndrome can be tough. This is because a lot of people may look at the person different, and think differently about them. However, they are the same and do feel the same way about things. This is a common misunderstanding with the Syndrome. You may think that they do not feel the same way, or are not able to make friends or think the same way but they can and do. This is why dealing with this Syndrome when the child looks different then everyone else can be something that is hard to do. A lot of children get picked on because of this, and it can crush emotions.
Families pick up the pieces when the time comes, and ensure that their child or loved one is getting the right amount of good attention. They try to speak their minds about the Syndrome, while being able to educate more people on what it is and how it affects the person. This allows more people to understand why this happens and know that it is just a problem with more cosmetics than brain power. There is still hope out there for those with this Syndrome and families hope to find something that can help them along their journeys.