ONE OF THE PROBLEMS WITH IP IN ADULTS!!

 



As we all know, IP doesn't just effect children, as IP angels grow up they face a whole knew world of problems. The pictures above are of an IP adult who has developed tumours under the nails on her hand and she has had to have amputations on the ends of her fingers .

I want to thank Gillian  Macpherson for sharing her photos with us. If there is any other Adult out would like to share there experience with us, we would be extremely grateful. xx

Shocking

MADISON HEIGHTS, Mich. (WJBK) -Jahmel Binion of Madison Heights, Mich. has the rare disorder ectodermal dysplasia, a condition characterized by a reduced ability to sweat, missing teeth and abnormal hair growth. 

He tells FOX 2's Randy Wimbley he's been getting teased his whole life, but never thought he'd be bullied by celebrities after posting a "selfie" on social media. 

He says people began recognizing him from a picture on Shaquille O'Neal's Instagram account. Former University of Michigan athlete Trey Burke and rapper Waka Flocka Flame are also said to have also joined in on the teasing. 

The photo on Shaq's Instagram has been taken down. 

Wimbley contacted Shaq via Twitter, officials with Burke's team, Utah Jazz, and Waka Flocka Flame's record label. No one responded. 

Binion says this has inspired him to start an anti-bullying campaign on Facebook called 'Hug Don't Judge.'

UPDATED TO ADD: Binion received apologies from all three via Twitter and personal phone calls. 

Read more: http://www.myfoxdetroit.com/story/25345293/mich-mans-selfie-mocked-by-celebrities-on-social-media#ixzz30SgTHvEX

Well I think this is shocking news, I am heart broken to hear about this story, as a mother with a child with a rare disorder I would be heartbroken for this to happen to my child.  I can only imagine what this poor young man has gone through in his life and then to have to deal with this. I think anyone who condones this  needs to look up on rare disorders and what the people who have them go through, I hope this is going to be a step forward for rare disorders and get them more notice then hopefully more research will be done in order to help these babies/children/adults.  I hope maybe celebs will look at this and join to help get the word out.  another way to help would be to join the facebook group Hug Don't Judge.