Monday, January 7, 2013

Why Help FIRST?

This blog was created with a mission to raise awareness for Ichthyosis and to help support the FIRST Foundation.  It is my goal to help the FIRST Foundation gain 'publicity' and to help raise donations to fulfill their mission.

The education about Ichthyosis and its treatments are incredibly necessary for the survival of many (Ichthyosis) babies born, especially those affected with Harlequin Ichthyosis. Time is of the essence, as another Ichthy mom wrote in her blog, Confetti Skin, Beauty Within. For medical professionals that know little or nothing about Ichthyosis, it could be life threatening. Not knowing exactly what to do in the event of a HI birth could cost a baby its life. Even the slightest touch of the human hand, whether a doctor's or mother's, could be deadly, as bacteria could easily cause a deadly infection.

Unfortunately, many times there are no warning signs or a pre-diagnosis that an unborn child is affected, unless the parent (or parents) are affected. The births of children affected are usually surprises which makes the situation that much more intense and critical. I know there are many things that can occur with the birth of a child which may be a 'surprise' but if more awareness is brought to Ichthyosis and if FIRST gains more attention from the public and media, it will be possible to educate more people including doctors.

If every doctor, who was unfamiliar with Ichthyosis, knew they could contact the FIRST Foundation in the event of a patient being affected, it could help dramatically. Having the correct information and treatments for a Collodion baby or Harlequin fetus could result in many successful outcomes. I have heard too many stories where an affected baby had been born and the doctors not only gave a misdiagnosis but also told the parent(s) that their child would not survive. If the doctor doesn't think the baby will survive does that mean they give up trying to save its life?

Not only does the FIRST Foundation provide the information medical professionals may need but they connect them with doctors who are experts in the field who can guide them with the proper care instructions. The FIRST Foundation also connects families so they can share stories, ideas, information, treatments and to have that support from someone who really understands what each other is going through.

The FIRST Foundation helps fund research for a cure. There are many different types of Ichthyosis which range in severity and the FIRST Foundation provides funds to help with many different studies being conducted. Not only are they looking for a cure but they are looking for better treatments for those who are affected.

So why help FIRST? I don't see any reason not to. My family was very fortunate to have had the experts there from the moment of Evan's birth. Not only the moment of but the days before when they gave us a diagnosis of Harlequin Ichthyosis before Evan was born. Not only are other doctors in many of our states in need of this type of information but doctors in other countries, where their medical care is not nearly as advanced as ours, are in need as well. The best way to get this information out is to share it. Help raise awareness and help promote the FIRST Foundation so every affected child can be  given the appropriate care and have the opportunity to live, like my young warrior.


1 comment:

  1. Thank you so much for educating me and so many other people about Harlequin Ichthyosis. I recently saw a reference to a ‘Harlequin baby’ in a book and found your site which has answered many questions.
    Evan really is an absolute cutie and it’s great to see that he has such wonderful, brave and incredible parents who clearly love him so very, very much.
    What a beautiful family. Thank you again and I wish you all a wonderfully happy new year!
    :O) Chloe