The mindset part 3:

The mindset of the people affected by the disorder and the people around the affected person:(Personal views of the Author)

One person in a family affected by the Hutchinson- Gilford syndrome by itself, is very saddening and painful, but there are cases where more than one member in a family gets affected. In this case, the family members have to take good care of not one, but two to three of their children affected by the syndrome.

In this case, the pain and grief is twice and thrice than normal and they definitely need the support of the people around them, in the form of relatives, friends and neighbors.

Progeria, being a less known disorder, not many understand the problems associated with it and the sufferings undergone by the family members. These people who are not fully understanding of the state of the affected person and their family, tend to mock their appearance, the way they speak, move about and everything associated with them.

Their mockery and insults only add to the sufferings of the patients and their family, and such acts must be seriously condemned. But you can't blame these individuals as it is the lack of understanding of the disorder that makes them seem like an insensitive lot. News of Progeria must be spread all over the world and more money should be spent on their research.

Movies like Paa (See Progeria in Media for more details) have significantly made it popular, but more has to be done. Sites putting up pictures of Progeria patients and calling them names of characters from fantasy movies or extra terrestrials must be stopped right away. These patients have hearts and they do suffer a whole lot.

If a member of our family suffer, would we be as insensitive or would we help them. It is every man's responsibility to come forward and help these poor souls and their families. Help spread the word...

As for the few doctors and researchers who spend a whole lot of their time in helping cure these patients, special credits and praises must be given to them for their service. A Few celebrities and volunteers have come forward to collect funds, help the patients and also spread the news of the disorder all over the world and these people also deserve some recognition. More people should take notice of the disease and more should be done to help them.

The mindest Part 2:

The mindset of the people affected by the disorder and the people around the affected person:(Personal views of the Author)

The person affected by the disorder behaves and grows normally during the initial few months and the parents themselves don't really find much difference in the appearance or the growth of the baby. Around a year or year and a half, two, the appearance begins to change and all the symptoms of the disorder begin to appear.

Even adults get scared and worried when they are affected by some sort of minor infection or disease. Being a child, not understanding much about the world around them and not having experienced anything in this wonderful world, except for the love of the parents and their family members, the child does tend to be scared than normal.

Children do tend to get scared of even small things, because of their lack of understanding of the world around them. The child affected by the disorder has a lot more reason to be afraid as the pain and difficulties experienced by them cannot be properly put into words.

Apart from heart related problems, breathing problems, physical weakness and pain, lack of proper immunity, which are felt only by them on the inside, physical changes, like narrow jaws, lack of proper growth of teeth, stunted growth of the overall body, all these sorts of appearance related problems show up.

This makes people around them notice and it might cause complexes and worries for the patient themselves and their family members. (Contd.)

The mindset part 1:

The mindset of the people affected by the disorder and the people around the affected person:(Personal views of the Author)

Progeria being a rare disorder, has fewer number of people affected by it. Though it might seem like a good thing, that not many are affected, it is indirectly a very bad thing for the people affected by it. Doctors and Researchers tend to do more work on diseases and disorders which affect people in larger numbers, not just because it means that they would get more money (a false thought that common man thinks regarding people in the medical industry), but also because that a lot of people need assistance right away, reducing a lot of deaths.

As the disorder is a rare one, the research done and medicines created for its treatment are relatively less, though of great value. Unlike the number of researches done for a Cancer or even a common cold, progeria does not have a quarter the work done on it, though there are a significant few who carry out work in finding the cure for the disease all over the world. These scientists and doctors must be greatly appreciated for their work.

That said, the lack of sufficient support, means lesser hope for the people affected by the disorder, causing more mental agony for the family members of the affected. The affected person himself or herself goes through a lot of pain and discomfort. As humans, when we are affected by mere cold, we long for those seven days (the usual time, perceived to be taken for the cold to let go of the patient) to end, so that we can live a painless, healthy life.

But the people affected by Progeria go through so much pain and so many variety of problems in their body, that they live their entire life, hoping for it to end, but not end in death.

Sadly death is currently the only way out and the families of the affected people, have to spend each day of their life, praying to God, to extend the period of their beloved child's life, but reduce his or her pain too. When humans cannot find a solution through science, they have to resort to God, and that is what happens in families which have people affected by fatal diseases and disorders. (Contd.)