{"id":30088,"date":"2017-12-31T12:08:16","date_gmt":"2017-12-31T17:08:16","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=30088"},"modified":"2025-10-04T04:46:09","modified_gmt":"2025-10-04T09:46:09","slug":"%d7%a4%d7%a8%d7%95%d7%99%d7%a7%d7%98-%d7%94%d7%a4%d7%a8%d7%a6%d7%95%d7%a4%d7%99%d7%9d-%d7%94%d7%97%d7%93%d7%a9%d7%99%d7%9d-%d7%aa%d7%95%d7%9e%d7%9a-%d7%91%d7%a0%d7%99%d7%a6%d7%95%d7%9c%d7%99-%d7%94","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/he\/the-fresh-faces-project-stands-with-ecd-survivors-these-are-their-stories\/","title":{"rendered":"\u05e4\u05e8\u05d5\u05d9\u05e7\u05d8 \"\u05e4\u05e8\u05e6\u05d5\u05e4\u05d9\u05dd \u05d7\u05d3\u05e9\u05d9\u05dd\" \u05ea\u05d5\u05de\u05da \u05d1\u05e0\u05d9\u05e6\u05d5\u05dc\u05d9 \u05d4\u05ea\u05e2\u05dc\u05dc\u05d5\u05ea \u05de\u05d9\u05e0\u05d9\u05ea \u05d1\u05d9\u05dc\u05d3\u05d5\u05ea: \u05d0\u05dc\u05d4 \u05d4\u05e1\u05d9\u05e4\u05d5\u05e8\u05d9\u05dd \u05e9\u05dc\u05d4\u05dd"},"content":{"rendered":"

\u05e4\u05e8\u05d5\u05d9\u05e7\u05d8 \"\u05e4\u05e8\u05e6\u05d5\u05e4\u05d9\u05dd \u05d7\u05d3\u05e9\u05d9\u05dd\" \u05ea\u05d5\u05de\u05da \u05d1\u05e0\u05d9\u05e6\u05d5\u05dc\u05d9 \u05d4\u05ea\u05e2\u05dc\u05dc\u05d5\u05ea \u05de\u05d9\u05e0\u05d9\u05ea \u05d1\u05d9\u05dc\u05d3\u05d5\u05ea: \u05d0\u05dc\u05d4 \u05d4\u05e1\u05d9\u05e4\u05d5\u05e8\u05d9\u05dd \u05e9\u05dc\u05d4\u05dd<\/h2>\n

\u05e8\u05d0\u05d9\u05d5\u05df \u05e2\u05dd \u05d3\u05d5\u05df \u05e1\u05de\u05d9\u05ea'<\/em><\/p>\n

\u05de\u05d0\u05ea \u05e7\u05d0\u05dc\u05d9\u05df \u05de. \u05dc\u05d5\u05e8\u05e0\u05e1
\n\u05d3\u05e6\u05de\u05d1\u05e8 2017<\/p>\n

\u05e0\u05d5\u05dc\u05d3\u05ea\u05d9 \u05d5\u05d2\u05d3\u05dc\u05ea\u05d9 \u05d1\u05e9\u05d9\u05e7\u05d2\u05d5 \u05d0\u05e6\u05dc \u05d0\u05de\u05d0 \u05d0\u05d5\u05d4\u05d1\u05ea, \u05e9\u05dc\u05d0 \u05e8\u05e7 \u05dc\u05d9\u05de\u05d3\u05d4 \u05d0\u05d5\u05ea\u05d9 \u05d0\u05d9\u05da \u05dc\u05d4\u05d9\u05d5\u05ea \u05d4\u05d0\u05de\u05d0 \u05d4\u05d8\u05d5\u05d1\u05d4 \u05d1\u05d9\u05d5\u05ea\u05e8 \u05e9\u05d0\u05e0\u05d9 \u05d9\u05db\u05d5\u05dc\u05d4 \u05dc\u05d4\u05d9\u05d5\u05ea, \u05d0\u05dc\u05d0 \u05d2\u05dd \u05d4\u05e2\u05e0\u05d9\u05e7\u05d4 \u05dc\u05d9 \u05d0\u05ea \u05d4\u05db\u05dc\u05d9\u05dd \u05d5\u05d0\u05ea \u05d4\u05db\u05d5\u05d7 \u05d4\u05d3\u05e8\u05d5\u05e9\u05d9\u05dd \u05db\u05d3\u05d9 \u05dc\u05d4\u05ea\u05de\u05d5\u05d3\u05d3 \u05e2\u05dd \u05db\u05dc \u05de\u05d4 \u05e9\u05de\u05d7\u05dc\u05ea \u05d0\u05e8\u05d3\u05d4\u05d9\u05d9\u05dd-\u05e6'\u05e1\u05d8\u05e8 (ECD) \u05de\u05d6\u05de\u05e0\u05ea.\u00a0 \u05d0\u05e0\u05d9 \u05e0\u05e9\u05d5\u05d0\u05d4 \u05dc\u05d1\u05e2\u05dc\u05d9 \u05d8\u05d5\u05e8\u05d9 \u05db\u05d1\u05e8 \u05dc\u05de\u05e2\u05dc\u05d4 \u05de-21 \u05e9\u05e0\u05d9\u05dd \u05d5\u05d9\u05e9 \u05dc\u05d9 \u05e9\u05dc\u05d5\u05e9 \u05d1\u05e0\u05d5\u05ea \u05d9\u05e4\u05d5\u05ea: \u05e7\u05e0\u05d3\u05d9\u05e1, \u05e7\u05d0\u05dc\u05d9\u05df \u05d5\u05e7\u05de\u05e8\u05d9\u05df.\u00a0 \u05d0\u05e0\u05d9 \u05e0\u05d4\u05e0\u05d9\u05ea \u05dc\u05e0\u05e1\u05d5\u05ea \u05dc\u05e4\u05e2\u05e0\u05d7 \u05d7\u05d9\u05d3\u05d5\u05ea \u05d5\u05dc\u05d4\u05d1\u05d9\u05df \u05d0\u05e0\u05e9\u05d9\u05dd, \u05d5\u05dc\u05db\u05df \u05d0\u05e0\u05d9 \u05d0\u05d5\u05d4\u05d1\u05ea \u05dc\u05d7\u05e7\u05d5\u05e8 \u05d0\u05ea \u05d4\u05ea\u05e0\u05d4\u05d2\u05d5\u05ea \u05d4\u05d0\u05d3\u05dd \u2013 \u05ea\u05d7\u05d5\u05dd \u05e9\u05d4\u05d5\u05d1\u05d9\u05dc \u05d0\u05d5\u05ea\u05d9 \u05dc\u05ea\u05d5\u05d0\u05e8 \u05e8\u05d0\u05e9\u05d5\u05df \u05d5\u05dc\u05ea\u05d5\u05d0\u05e8 \u05e9\u05e0\u05d9 \u05d1\u05e4\u05e1\u05d9\u05db\u05d5\u05dc\u05d5\u05d2\u05d9\u05d4. \u05db\u05d9\u05d5\u05dd \u05d0\u05e0\u05d9 \u05dc\u05d5\u05de\u05d3\u05ea \u05dc\u05ea\u05d5\u05d0\u05e8 \u05d3\u05d5\u05e7\u05d8\u05d5\u05e8 \u05d1\u05e4\u05e1\u05d9\u05db\u05d5\u05dc\u05d5\u05d2\u05d9\u05d4 \u05de\u05e9\u05e4\u05d8\u05d9\u05ea.<\/p>\n

\u05ea\u05d0\u05e8 \u05db\u05d9\u05e6\u05d3 \u05d2\u05d9\u05dc\u05d9\u05ea \u05e9\u05d9\u05e9 \u05dc\u05da ECD:<\/strong><\/p>\n

I was diagnosed with ECD in September of 2014 after going through six months of doctors\u2019 visits, in which I saw a total of 25 doctors. My first symptoms were masses that grew on my lower back, a mass on my colon, and my eyes turned bright red like a Halloween costume and stayed that way for weeks.\u00a0 After two outpatient surgeries on the masses on my back and on my eyes the tissue was sent to the Cleveland Hospital and a diagnosis was given to me from a piece of paper slid across the desk by my surgeon with his only comment being \u201cYou are a very rare lady.\u201d I was diagnosed just in time to have a major surgery on my colon which is where my ECD has taken up residency.\u00a0 The first report I received was that I had 2-5 years to live. I immediately called my sister Leretha and she came to my rescue. There have been many strong supporters in my corner, but Leretha along with my daughters have been my saving grace through the whole process.<\/p>\n

Describe some of your symptoms\/struggles with ECD:<\/strong><\/p>\n

\u05de\u05dc\u05d1\u05d3 \u05d4\u05d1\u05e2\u05d9\u05d5\u05ea \u05e9\u05e6\u05d5\u05d9\u05e0\u05d5 \u05dc\u05e2\u05d9\u05dc, \u05d0\u05e0\u05d9 \u05e1\u05d5\u05d1\u05dc \u05de\u05db\u05d0\u05d1\u05d9\u05dd \u05de\u05ea\u05de\u05e9\u05db\u05d9\u05dd \u05d1\u05db\u05dc \u05d4\u05d2\u05d5\u05e3, \u05e9\u05d4\u05ea\u05d7\u05d9\u05dc\u05d5 \u05d1\u05d3\u05e8\u05d2\u05d4 9 \u05e7\u05dc\u05d4 \u05d1\u05e1\u05d5\u05dc\u05dd \u05d4\u05db\u05d0\u05d1 \u05de-1 \u05e2\u05d3 10. \u05e2\u05dd \u05d6\u05d0\u05ea, \u05de\u05db\u05d9\u05d5\u05d5\u05df \u05e9\u05d4\u05ea\u05e8\u05d2\u05dc\u05ea\u05d9 \u05d0\u05dc\u05d9\u05d4\u05dd \u05dc\u05d0\u05d7\u05e8 \u05e9\u05dc\u05d5\u05e9 \u05e9\u05e0\u05d9\u05dd, \u05db\u05d9\u05d5\u05dd \u05d4\u05dd \u05e2\u05d5\u05de\u05d3\u05d9\u05dd \u05e2\u05dc \u05db-6 \u05d1\u05d9\u05de\u05d9\u05dd \u05d8\u05d5\u05d1\u05d9\u05dd.\u00a0 \u05d9\u05e9 \u05dc\u05d9 \u05d1\u05e2\u05d9\u05d5\u05ea \u05e9\u05d9\u05d5\u05d5\u05d9 \u05de\u05e9\u05e7\u05dc \u05e9\u05d2\u05e8\u05de\u05d5 \u05dc\u05d9 \u05dc\u05d9\u05e4\u05d5\u05dc \u05dc\u05dc\u05d0 \u05e1\u05d9\u05d1\u05d4 \u05e0\u05e8\u05d0\u05d9\u05ea \u05dc\u05e2\u05d9\u05df. \u05d6\u05d4 \u05e7\u05e8\u05d4 \u05e4\u05e2\u05dd \u05d0\u05d7\u05ea \u05d5\u05e0\u05d7\u05ea\u05ea\u05d9 \u05e2\u05dc \u05d1\u05d8\u05d5\u05df \u05d8\u05e8\u05d9! \u05d4\u05ea\u05d1\u05d9\u05d9\u05e9\u05ea\u05d9 \u05db\u05dc \u05db\u05da \u05e9\u05e7\u05e4\u05e6\u05ea\u05d9 \u05e2\u05dc \u05e8\u05d2\u05dc\u05d9\u05d9 \u05d5\u05e8\u05e5\u05ea\u05d9 \u05de\u05e2\u05d1\u05e8 \u05dc\u05e8\u05d7\u05d5\u05d1 \u05dc\u05de\u05e1\u05e2\u05d3\u05d4 \u05e1\u05de\u05d5\u05db\u05d4, \u05e9\u05dd \u05e0\u05ea\u05e0\u05d4 \u05dc\u05d9 \u05de\u05dc\u05e6\u05e8\u05d9\u05ea \u05e0\u05e4\u05dc\u05d0\u05d4 \u05de\u05d2\u05d1\u05d5\u05ea \u05e0\u05d9\u05d9\u05e8 \u05db\u05d3\u05d9 \u05dc\u05e0\u05d2\u05d1 \u05d0\u05ea \u05d4\u05d1\u05d8\u05d5\u05df \u05d4\u05e8\u05d8\u05d5\u05d1 \u05d5\u05d4\u05db\u05d1\u05d3 \u05de\u05d4\u05de\u05d2\u05e4\u05d9\u05d9\u05dd \u05d4\u05d0\u05d4\u05d5\u05d1\u05d9\u05dd \u05e2\u05dc\u05d9\u05d9.<\/p>\n

Describe the treatments\/procedures you have undergone with ECD:<\/strong><\/p>\n

\u05e2\u05d1\u05e8\u05ea\u05d9 \u05e9\u05d1\u05e2\u05d4 \u05e0\u05d9\u05ea\u05d5\u05d7\u05d9\u05dd, \u05e9\u05dc\u05d5\u05e9 \u05e7\u05d5\u05dc\u05d5\u05e0\u05d5\u05e1\u05e7\u05d5\u05e4\u05d9\u05d5\u05ea, 5 \u05d1\u05d3\u05d9\u05e7\u05d5\u05ea MRI, 5 \u05d1\u05d3\u05d9\u05e7\u05d5\u05ea PET, 9 \u05d1\u05d3\u05d9\u05e7\u05d5\u05ea CT, \u05d5\u05d0\u05d9\u05e0\u05e1\u05e4\u05d5\u05e8 \u05d1\u05d3\u05d9\u05e7\u05d5\u05ea \u05d3\u05dd. \u05e0\u05d8\u05dc\u05ea\u05d9 \u05de\u05d2\u05d5\u05d5\u05df \u05e8\u05d7\u05d1 \u05e9\u05dc \u05ea\u05e8\u05d5\u05e4\u05d5\u05ea, \u05db\u05d2\u05d5\u05df \u05d0\u05e0\u05d0\u05e7\u05d9\u05e8\u05d4, \u05e2\u05d9\u05e8\u05d5\u05d9\u05d9 \u05e1\u05d8\u05e8\u05d5\u05d0\u05d9\u05d3\u05d9\u05dd \u05d5\u05db\u05d3\u05d5\u05e8\u05d9\u05dd, \u05d6\u05e8\u05d9\u05e7\u05d5\u05ea \u05d5\u05ea\u05e8\u05d5\u05e4\u05d5\u05ea \u05de\u05ea\u05d5\u05d8\u05e8\u05e7\u05e1\u05d8, \u05d4\u05d9\u05d3\u05e8\u05d5\u05e7\u05d5\u05d3\u05d5\u05df, \u05d8\u05e8\u05d0\u05de\u05d3\u05d5\u05dc, \u05e7\u05e1\u05e0\u05e7\u05e1, \u05d8\u05d9\u05e4\u05d5\u05ea \u05e2\u05d9\u05e0\u05d9\u05d9\u05dd \u05e9\u05dc \u05e4\u05e8\u05d3\u05e0\u05d9\u05d6\u05d5\u05dc\u05d5\u05df, \u05d8\u05d9\u05e4\u05d5\u05ea \u05e2\u05d9\u05e0\u05d9\u05d9\u05dd \u05d5\u05de\u05e9\u05d7\u05d5\u05ea \u05e9\u05dc \u05d0\u05e8\u05d9\u05ea\u05e8\u05d5\u05de\u05d9\u05e6\u05d9\u05df, \u05d0\u05d9\u05e0\u05e1\u05d5\u05dc\u05d9\u05df, \u05d5\u05d4\u05e8\u05e9\u05d9\u05de\u05d4 \u05e2\u05d5\u05d3 \u05d0\u05e8\u05d5\u05db\u05d4. \u05e2\u05dd \u05d6\u05d0\u05ea, \u05d9\u05e9 \u05dc\u05d9 \u05e6\u05d5\u05d5\u05ea \u05de\u05d3\u05d4\u05d9\u05dd \u05e9\u05dc \u05e2\u05e9\u05e8\u05d4 \u05e8\u05d5\u05e4\u05d0\u05d9\u05dd, \u05d1\u05e8\u05d0\u05e9\u05d5\u05ea \u05d4\u05d0\u05d9\u05e9 \u05d4\u05de\u05d1\u05e8\u05d9\u05e7 \u05d5\u05d4\u05e8\u05d7\u05d5\u05dd \u05d1\u05d9\u05d5\u05ea\u05e8 \u05e9\u05d0\u05e0\u05d9 \u05de\u05db\u05d9\u05e8\u05d4, \u05d3\"\u05e8 \u05d0\u05dc\u05d9 \u05d3\u05d9\u05d0\u05de\u05d5\u05e0\u05d3 \u05de\u05de\u05e8\u05db\u05d6 \u05d4\u05e1\u05e8\u05d8\u05df \"\u05de\u05de\u05d5\u05e8\u05d9\u05d0\u05dc \u05e1\u05dc\u05d5\u05d0\u05df \u05e7\u05d8\u05e8\u05d9\u05e0\u05d2\", \u05d5\u05d4\u05d0\u05d9\u05e9\u05d4 \u05d4\u05d1\u05e7\u05d9\u05d0\u05d4 \u05d1\u05d9\u05d5\u05ea\u05e8, \u05d0\u05da \u05d2\u05dd \u05d4\u05db\u05d9 \u05e6\u05e0\u05d5\u05e2\u05d4 \u05d5\u05d0\u05db\u05e4\u05ea\u05d9\u05ea \u05e9\u05d0\u05e0\u05d9 \u05de\u05db\u05d9\u05e8\u05d4, \u05d3\"\u05e8 \u05d0\u05d9\u05d5\u05d5\u05d9-\u05d1\u05e8\u05d0\u05d5\u05df \u05de\u05d1\u05d9\u05ea \u05d4\u05d7\u05d5\u05dc\u05d9\u05dd \"\u05db\u05e8\u05d9\u05e1\u05d8 \u05d0\u05d3\u05d1\u05d5\u05e7\u05d9\u05d8\" \u05d1\u05d0\u05d9\u05dc\u05d9\u05e0\u05d5\u05d9.<\/p>\n

\u05ea\u05d0\u05e8 \u05d0\u05ea \u05d4\u05d4\u05e9\u05e4\u05e2\u05d4 \u05e9\u05d4\u05d9\u05d9\u05ea\u05d4 \u05dc\u05de\u05d7\u05dc\u05ea ECD \u05e2\u05dc \u05d7\u05d9\u05d9\u05da:<\/strong><\/p>\n

ECD is a sneaky, relentless, and money grabbing disease. Sneaky because you never know where in your body it will attack next. Relentless because once you tackle it in one area it comes harder in another. Money grabbing because it is so rare with less than 500 people living with the disease most of the treatments aren\u2019t inherently covered by insurance. You and your doctor (if you have a good one) will have to fight to get treatments covered.\u00a0 Even then, with travel to see a specialist and the off-label medicines you might spend your whole life savings to continue to have a good quality of life or possibly even to save your life. I was going through life having a good time and BAM!!!! out of nowhere ECD came and said \u201cNope, not happening you belong to me now!\u201d This led me to take a Family and Medical Leave (FMLA) leave from my job as a Manager\/Assistant Director at the Pacific Garden Mission and eventually resigning my position. But just in time, Jesus stepped in and said \u201cYou are my child I will not leave or forsake you!!!\u201d and I knew life would be okay: different but okay.<\/p>\n

\u05de\u05d4 \u05d4\u05de\u05d5\u05d8\u05d9\u05d1\u05e6\u05d9\u05d4 \u05e9\u05d4-ECD \u05e0\u05d5\u05ea\u05df \u05dc\u05da \u05d1\u05d7\u05d9\u05d9\u05dd?<\/strong><\/p>\n

\u05dc\u05d7\u05d9\u05d5\u05ea \u05db\u05dc \u05d9\u05d5\u05dd \u05d1\u05de\u05dc\u05d5\u05d0\u05d5 \u05d5\u05dc\u05d1\u05dc\u05d5\u05ea \u05d6\u05de\u05df \u05e2\u05dd \u05d4\u05de\u05e9\u05e4\u05d7\u05d4 \u05e9\u05dc\u05d9, \u05dc\u05d9\u05e6\u05d5\u05e8 \u05d6\u05db\u05e8\u05d5\u05e0\u05d5\u05ea \u05e9\u05d9\u05d9\u05e9\u05d0\u05e8\u05d5 \u05dc\u05e0\u05e6\u05d7. \u05db\u05de\u05d5 \u05db\u05df, \u05d4\u05e4\u05db\u05ea\u05d9 \u05dc\u05de\u05d5\u05d3\u05e2\u05ea \u05d9\u05d5\u05ea\u05e8 \u05dc\u05d0\u05d7\u05e8\u05d9\u05dd \u05d5\u05dc\u05de\u05d0\u05d1\u05e7\u05d9\u05dd \u05e9\u05dc\u05d4\u05dd, \u05d5\u05db\u05e9\u05d0\u05e0\u05d9 \u05d9\u05db\u05d5\u05dc\u05d4 \u05dc\u05e2\u05d6\u05d5\u05e8 \u05dc\u05de\u05d9\u05e9\u05d4\u05d5 \u05d4\u05d6\u05e7\u05d5\u05e7 \u05dc\u05db\u05da, \u05d0\u05e0\u05d9 \u05e2\u05d5\u05e9\u05d4 \u05d6\u05d0\u05ea, \u05dc\u05d0 \u05de\u05e9\u05e0\u05d4 \u05de\u05d4 \u05d4\u05de\u05d7\u05d9\u05e8. \u05d0\u05d7\u05d3 \u05d4\u05d3\u05d1\u05e8\u05d9\u05dd \u05e9\u05de\u05e8\u05d2\u05d9\u05d6\u05d9\u05dd \u05d0\u05d5\u05ea\u05d9 \u05d1\u05d9\u05d5\u05ea\u05e8 \u05d4\u05d5\u05d0 \u05db\u05e9\u05de\u05d9\u05e9\u05d4\u05d5 \u05d0\u05d5\u05de\u05e8 \u05dc\u05d9 \u05e9\u05d0\u05e0\u05d9 \u05dc\u05d0 \u05e0\u05e8\u05d0\u05d9\u05ea \u05d0\u05d5 \u05de\u05ea\u05e0\u05d4\u05d2\u05ea \u05db\u05de\u05d5 \u05d7\u05d5\u05dc\u05d4, \u05db\u05e9\u05d1\u05e4\u05d5\u05e2\u05dc \u05d0\u05e0\u05d9 \u05d7\u05d5\u05dc\u05d4 \u05d5\u05e0\u05d0\u05d1\u05e7\u05ea \u05db\u05dc \u05d9\u05d5\u05dd \u05dc\u05e7\u05d5\u05dd \u05de\u05d4\u05de\u05d9\u05d8\u05d4 \u05d5\u05dc\u05d7\u05d9\u05d5\u05ea \u05d0\u05ea \u05d4\u05d7\u05d9\u05d9\u05dd.\u00a0 \u05db\u05e9\u05de\u05d5\u05d3\u05d9\u05e2\u05d9\u05dd \u05dc\u05da \u05e9\u05e0\u05e9\u05d0\u05e8 \u05dc\u05da \u05e8\u05e7 \u05d6\u05de\u05df \u05de\u05d5\u05d2\u05d1\u05dc, \u05d0\u05ea\u05d4 \u05d9\u05db\u05d5\u05dc \u05e4\u05e9\u05d5\u05d8 \u05dc\u05d5\u05d5\u05ea\u05e8 \u05d0\u05d5 \u05dc\u05d1\u05d7\u05d5\u05e8 \u05dc\u05d4\u05d9\u05dc\u05d7\u05dd \u05d0\u05ea \u05d4\u05de\u05d0\u05d1\u05e7 \u05d4\u05d8\u05d5\u05d1. \u05db\u05d1\u05e8 \u05d0\u05de\u05e8\u05ea\u05d9 \u05dc\u05da \u05e9\u05d0\u05de\u05d9, \u05d2'\u05e0\u05d8, \u05dc\u05d0 \u05d2\u05d9\u05d3\u05dc\u05d4 \u05e4\u05e8\u05d0\u05d9-\u05d0\u05e0\u05e9\u05d9\u05dd, \u05d0\u05d6 \u05d0\u05e0\u05d9 \u05db\u05d0\u05df \u05dc\u05de\u05e8\u05d7\u05e7\u05d9\u05dd \u05d0\u05e8\u05d5\u05db\u05d9\u05dd.<\/p>\n

What do you want the world to know about ECD?<\/strong><\/p>\n

It is an extremely rare disease that affects each person differently, but is a rare type of slow-growing blood cancer called a histiocytic neoplasm, which results in the overproduction of cells called histiocytes.\u00a0 It\u2019s a disease that\u00a0not all\u00a0doctors know about.\u00a0 Not because of a lack of skill, but because of lack of knowledge that one the disease exists and how to treat the disease when it is acknowledged. To my knowledge, I am the only African-American diagnosed with the disease which speaks volumes regarding its rarity. We need people to donate time and money to research for finding not only a cure, but to educate doctors, nurses, and other medical professionals in order for them to be knowledgeable in diagnosing and treating individuals with ECD.\u00a0 We may be small in numbers, but we are big in providing for our families, making a difference in our communities, and making this world the best world possible for our offspring.<\/p>\n

\u05ea\u05d5\u05d3\u05d4 \u05e9\u05d4\u05e7\u05e9\u05ea\u05dd \u05dc\u05e1\u05d9\u05e4\u05d5\u05e8 \u05e9\u05dc\u05d9.<\/p>\n

\u05de\u05d5\u05e4\u05d9\u05e2 \u05d2\u05dd \u05d1\u05d1\u05dc\u05d5\u05d2 \u05e9\u05dc \u05e7\u05d0\u05dc\u05d9\u05df:\u00a0fashionthunderclap.blogspot.com<\/a><\/p>","protected":false},"excerpt":{"rendered":"

\u05d3\u05d5\u05df \u05e1\u05de\u05d9\u05ea', \u05e0\u05d9\u05e6\u05d5\u05dc\u05ea ECD, \u05de\u05e9\u05ea\u05e4\u05ea \u05d1\u05de\u05e1\u05e2 \u05e9\u05dc\u05d4 \u05db\u05d7\u05d5\u05dc\u05d4 \u05d1\u05de\u05d7\u05dc\u05d4 \u05d6\u05d5.<\/p>","protected":false},"author":20,"featured_media":2727,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[272],"tags":[331],"class_list":["post-30088","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-voices-of-ecd","tag-331"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/30088","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/comments?post=30088"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/30088\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media\/2727"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media?parent=30088"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/categories?post=30088"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/tags?post=30088"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}